Hey all! :)

[mspaghettio]

Hello! I'm so excited to find this... it's been impossible trying to figure all this out alone!

My story:
I'm Melinda. I'm 25, live in North Carolina, and I was diagnosed about a year ago. I'm single, live alone, and don't have any family nearby or many friends because I still live near the college I graduated from 2 years ago and everyone left me! It's been really hard going through this and feeling like I have to beg or pay people to drive me to 7am tests etc, so I'm excited to have a group of people who understand that and can support me (and me, them!). I also had a terrible first GI (he said diet was completely unrelated to flares!!) so I feel I'm a little behind the curve as far as taking care of myself. I HATE HATE the idea of taking 8 pills a day so I've been a little too stubborn with trying new medicine, frankly because I'm scared of it. So I'm interested to hear everyone's thoughts on different treatments, especially natural/holistic approaches. I have found prayer, heating pads, and hot tea to be my biggest aids so far!!

As for the nitty gritty....I was lucky; I had been having pain like my appendix was about to pop for a few months and when I finally got health insurance I went to my doctor, got a CT and right away they thought it was Crohn's. I took Entocort for about 2 months and the pain seemed to go away, for the most part. Well, then it came back (my first doctor was a bum and just sortof disappeared when I told him my prescription ran out).

I was trying to ignore it because I was still trying to pretend it wasn't happening, but then I got really sick and spent a few days in the hospital with C.Diff. I had so many tests done then they refused to let me go without making an appt with their GI because I was having an obvious flare. Then I tried Asacol but would up in the hospital again with agonizing neck pain and headache. My last colonoscopy shows 4mm stricture and a fistula, so they are thinking 6MP or possibly surgery depending on this "small bowel follow through." I have no idea what that is but it's next week! Right now I'm taking Pentasa but have been having bad neck pain and headache again (maybe allergic to mesalamine...has anyone experienced this??). I'm trying to decide if I should stop taking it or keep trying.

I'm not in a whole lot of pain, but I know 4mm is pretty serious so I'm trying to take it easy with diet, but honestly I can't make sense of everything I'm readying about that. Some people say no carbs, or no sugar, or no veggies and I'm pretty lost. I'm thinking avoid processed foods and lots of sweets, raw veggies...something like that.

Anyways, hi, and thanks for reading. I look forward to getting to know everyone!

Melinda

 

[Crohn's 35]

:bigwave: Hi Melinda, welcome to the forum, glad you found us.

I can't believe you are alone, one thing us Crohnies need are support and family is so important. We are here to comfort you and help you out but family is far more closer.

We understand the medicine route, there are others to try, and LDN, and biologics, depends on your budget and insurance. Having a stricture or narrowing can cause blockages, so until it becomes unblocked I would be careful of chewy foods, and dairy.

A small barium follow thru is when you drink some barium, and yes some are yucky and they take pictures (xrays) as it is travelling to see how bad and where the narrowing is. Laproscopic surgery is the best way to go if you have surgery. Lots of options, and you will get lots of help here. You can vent or ask questions we are here for you! Welcome again!

 

[dreamintwilight]

Melinda - We have a lot of similarities in our stories. i can really sympathize with you. I'm 25 and was just recently diagnosed this past February after spending New Year's Eve in the hospital with an abscess (and fistulas). Thankfully, I have my husband here to support me, but I understand what you mean about all your friends leaving you. I moved to Chicago from Florida and have been living here for almost 2 years, but have found it hard to make friends because I've been in and out of jobs and school to hold on to any lasting relationships. The people I've met here on the forum have really been my strongest support system. I'm so glad you found it

I have strictures in my terminal ileum as well and was nervous about what I ate. I wasn't sure what would or wouldn't cause a blockage and avoided anything with skins and seeds. That was the main advice I got from my GI. Unfortunately I ended up with a partial obstruction just last week, but I think it was due to my meds not being strong enough to counteract the inflammation rather than my diet (though it is still important). I'm back on Entocort and it's been keeping the pain and inflammation away that caused me to go into the hospital this most recent time. I go to see my GI this Friday to figure out what the next step is.

It must be so difficult going through all of this alone. I know I've had some rough times, and imagining how it would have been without support...I admire you for your strength! 6 MP is similar to Imuran (azathioprine) and is a very popular drug used to treat Crohn's. If you search on the site you can find more info on it, but try not to get too freaked out about the side effects. For some people it really works and others it doesn't. If not, there are plenty of options out there as far as medications like biologics that Jettalady mentioned. I actually might be starting Imuran soon too.

My other piece of advice is to possibly try some supplements/vitamins to boost the healing in your gut and nutrients you may be lacking in due to the disease. Fish oil, probiotics, multi-vitamins, and vitamin D just to name some can be helpful. You can use the "Tags" tab at the top to find more threads relating to the subjects you want to know more about. Feel free to ask questions on the forum. There's so much information on here Keep us updated on your progress!

 

[semicolon306]

WELCOME to out "SPECIAL" family and you will find very supportive people here will to help with some great information. I know it has been a help for me as well as others.

Good Luck with everything

 

[Journey]

Hi Ms. spaghettio. Welcome to the forum.
My recommendation: avoid spaghettios

 

[Kegsworth]

What part of NC do you live in? I'm at Fort Bragg, currently.

Welcome to the forums.

 

[My Butt Hurts]

Hi Melinda, glad you found us!
I'm sorry you're alone there. You can always vent to us or ask us anything.
Re: diet - it's different for everyone. It's kind of a trial and error type of thing, but something that might help you is to google 'low residue diet'. Those foods may sit a bit better in your belly, and especially since they are a bit more easily digestible, that might help with your stricture.

I felt the same way you do about taking pills. Before Crohn's, I wouldn't even take a Tylenol for a headache or cramps. Now, I will take anything that helps me feel better. It's just worth it.

I wonder if there is a way to test to see if you have a sulfa drug allergy (without the obvious "test" of just TAKING it), which asacol and pentasa both are.

Welcome to the forum!
MBH

 

[Lydia]

If you are looking for a drug with low side effects that can help, look into low dose naltrexone. There is a subforum for it in the treatment part of this forum.

 

[Astra]

Hi Melinda
and welcome

Everyone has said pretty much everything, glad you found us, you're no longer alone!
I've been taking Pentasa willy nilly for 5 years, and I was reluctant and blase with my meds too! And ignored it, ate what I wanted but ended up in hospital with an obstruction and infection in January. I was naughty, but now I'm taking my meds and supplements religiously cos I don't wanna end up back in hospital.
Stick with the Pentasa for a bit longer, I just don't think diet alone will help if you have any inflammation, I've never had side effects from it. Pentasa and Asacol (5-AZA) do not contain the compound sulfapyridine, unlike sulfasalazine which does, so they are milder with less side effects
see you around the forum
good luck
lotsa luv
Joan xxx

 

[RedSoxFan]

Melinda,
I believe the key to good long term treatment is to find a doctor you like and trust. Once you get that it all becomes quite a bit easier. Right now I am looking for that Dr. I've been on Pentasa for about 12 years and I think it worked well for me. Now I really think it's run it's course and I have to move on to something else. I tried Imuran and had the same side effects as you are having with the Pentasa (aweful headache, fever, just felt like crap). I only lasted a week on it. I'd love to try the LDN, but I can't find a doctor willing to prescribe it. So biologic looks to be the next step and I am not fond of needles (heck is anybody really?). So, especially in the absence of support, please make sure you find that doctor you trust. Keep up the faith. We're here if you want to vent or ask stupid questions like me.

JK

 

[Nancy Lee]

Hi Melinda!

Welcome to the Forum!!
I know you will make lots of friends here
and find a lot of useful information!!

Welcoming Hugs~Nancy

 

[Jennjenn]

Welcome

 

[mspaghettio]

thanks yall!!

Wow I am just overwhelmed with all of your welcomes! It's been a rough day- it seems I really cannot tolerate the sulfa- family (very technical term haha) as I am having intense neck and head pain, but fortunately I had some Percocet left over from the last time this happened!

Thanks to everyone for explaining some things to me. I am def. going to look into the low residue diet (very sad having to give up spaghettios...), and I think the fish oil is a great idea too. I have found probiotics help keep me a little more regulated I have found a great doctor at the UNC Chapel Hill hospital GI clinic (to answer your question I live in Chapel Hill!), which I am very thankful to live near.

It's true that it stinks not having family around...my dad lives about 2.5 hours away but I can't legally drive to visit him for a few more months (long story) so I have been feeling alone, and I'm lifted up to have so many welcoming responses so thanks you guys!!! I look forward to talking to you dreamintwilight since it sounds like we have similar stories.

One question for anyone else who may drop me a line.... I have a LOT of leftover Asacol and Pentasa, anyone have an idea of how I can get this to someone who needs it? Not sure what the rules are really so I hope that's not inappropriate, it just seems such a shame to toss such an expensive medicine you know?

PS Jettalady your wavin smiley definitely made me smile!!

 

[teeny5]

Welcome to the forum! Diet varies with all of us. I can eat spaghetti anytime but can't eat beef anymore. You will have figure diet out through trial and error. Keep a food diary and pay attention to how you feel after you eat. I was like MBH, never liked taking meds but now with Crohn's I will take anything if it will make me feel better. I wish I had some suggestions for holistic remedies for you. Hope you get a good GI. It can make all the difference.

 

[ameslouise]

Hi Melinda and welcome!

Check with your doc or the UNC hosptial on how to dispose of unused drugs. Though you may want to keep the Entocort JIC you need it in future.

Have you checked to see if there is a Crohn's support group at the UNC Gi Clinic? While this certainly would not take the place of family or friends, talking with other people who have "been there" can really help. In the meantime, we are all here for you! You will learn tons from poking around the threads here.

Good luck with the meds and getting things under control.

- Amy

 

[dreamintwilight]

I look forward to talking with you more too, Melinda. If you have Facebook, feel free to contact me on there too. My page is in my signature

I felt the same way you did about leftover meds. I asked a similar question on the forum when I first started Entocort. Suggestions I got were to save it until expiration in case you need it again (though I doubt you'll want to use yours again! Haha). Some people also mentioned their pharmacy taking unused medications back (mine doesn't do that, but perhaps you could check). There was also mention of certain organizations that take leftover medications and distribute them to people living in countries pressed for better medications, but I never researched that myself (I ended up just keeping my Entocort). I noticed on my last prescription label the pharmacist recommends to throw out any leftover medication, so it seems like it's not that big of a deal. But I really do wish there was a universal method of reusing them. I hate to waste as well.

 

[Astra]

Hi Melinda

Your Pentasa and Asacol are sulfa free. I posted back to you 29/4 about it.
xx

 

[Kegsworth]

Ah, I went to Chapel Hill to get my second opinion! I also frequent the spot on weekends with my buddies . . . there's more to do in college towns than military towns.

Hope you're doing better.