New here and need support/advice

Hi, this is my first time on a discussion thread site. I've had Crohn's since 2001. I am a 29yr old wife and mother. I used to be a police officer and then trained to work for EMS, which I did for 5 yrs. I am now a stay at home mom for the past 5 yrs with my beautiful daughter, Raegan. I am also a nursing student and live in Clemson, SC. I don't know anyone with Crohn's disease and besides my husband, I have no support system. Last year around Christmas, I had my first bowel resection. They removed the illeum and surrounding areas. 30 days later I was back under the knife and they removed more active Crohn's that was missed the first time. Previous to those surgeries I have been on and tried every med under the sun. My body does not seem to respond to the usual frontline meds that most people with Crohn's respond to. I was even on Remicade for over a year with no difference. Also, prednisone has no effect on the Crohn's for me (besides making me mean as a snake and not be able to sleep!). Also, I have never had any remission periods, except for when I was pregnant with my daughter. My whole adult life I have had active flare-up type symptoms. My symptoms started getting really bad a few weeks ago and I was sent for a CT scan. I saw my doctor today and there are a couple of hernias, and a lot of inflammation, swelling, thickening and stricturing in several different areas. He said he would hope that the Crohn's is not back already, with it only being a year since the last surgery, but the only way to know is to do another Colonoscopy. So I'm doing that next week. I am just so tired of being sick and tired. For whatever reason, right now, the doctor said my colon and stomach are not emptying. My stomach just spasms and cramps like the food needs to come out, but doesn't. Then when it does, it's just liquid, and is very painful. When I eat, it feels like I'm digesting razor blades. I go to the bathroom 12-15 times a day. I hate this! I am too young to be this sick and feel this bad!! Is there anybody out there who can relate? I just need a friend maybe, someone who knows how I feel. It's hard for me to talk to my husband because he just gets frustrated that he can't fix it, and gets to stressed out. I don't want him to fix anything, just to be there and listen and talk to me like a friend. I think it scares him when I talk about it, because he starts worrying how he'll be able to provide for us if I'm in the hospital more and we won't have anybody to watch our daughter. So he worries he'll lose his job if he has to miss work because of me. I feel like a burden and like I have no one to talk to....

I am so sorry to hear about this. I have just been diagnosed with Crohns and am scheduled for surgery to remove my gall bladder this Friday. I too feel like a burden. It's very depressing to always be in pain and I feel like I can't spend time with my daughter as I should. I'm sometimes mean to my family and boyfriend without meaning to be and I'm scared I will push them away. I hope things get better for you.

Im so sorry you are going through all that. are there any friends you trust enough to tell them all about your situation? my friends have been such a support, they just let me complain and even cry to them. one friend even would do multiple bathroom runs with me when we were out. they have been my support system since i dont know anyone with crohns. If you have any friends you trust, I would tell them how you are struggling. good luck to you and hopefully you find something that works

I definitely understand the pain. I was dealing with that until i had my first surgery that ultimately lead to my diagnosis. The pain ended up getting so bad that i was nearly screaming. I couldnt move without being in pain. Turns out i actually had a perforated small intestine and colon. I know that the pain sucks, but fortunately there are people who have an idea of how things feel.

Thank u all so much for responding. I can't tell u how much it means to me to hear from all of u. It's looking like they're going to have to go back in and remove more intestine/colon. I know for this colonoscopy they are going to do a propofol sedation instead of the regular conscious sedation with versed and phentnyl because they want to go all the way up to the stomach to look at it. Anyone ever had that kind of sedation before?? I'm. So glad I found this site. Thanks so much. And yeah, I have friends I can talk to and I do. My mom died 4 yrs ago and she was the only family I had so I really miss her and feel like she's the only one who would understand and that I wouldn't be a burden to. I know this is just my own stinkin' thinking' and that my friends want to be there for me, it's just hard unloading all this crap to people who haven't known me that long. Anyways, I'm glad I have u guys! Thanks again! Beth

Hi Beth

I've had Crohns since 1986 and thankfully I've not had any surgery......yet. I've had surgery due to the Crohn's related arthritis though - 15 and counting.
Never feel like you are alone in all this - I only joined this forum yesterday and it's been great to get some crap off my chest. My family are great as is my partner but they don't suffer from Crohns - they just see what I go through.
Hang in there petal - we're all behind you. Keep us posted
Lots of gentle hugs xxx

Thanks Hexie! Your words mean a lot!

Beth - you're welcome - it's a real relief to know other people have been through the same and came out the other side.

Hi Beth and welcome to the forum. Can definetly relate to the pain, out of interest as a liquid diet been mentioned to you at all? I know this is not ideal but I went on Modulen shakes leading up to my op because trying to have food pass through my bowel was getting unbearable. The shakes did not get rid of all of the pain but it did enough that I was able to get myself into work until a day before the op. I don't have many friends who I could talk to about this but I do have someone at work who is coeiliac (sp?) and she can really relate to the sudden rush to the loo issues. And of course there is my new family here, I never knew that I would find such a wonderful, caring bunch of people, if one positive came from my latest flare up is that it led me here. I am glad you have found us and know you are not alone :hug:

Hi Beth!

Honey, when you said it feels like you are eating razorblades---I have said that many times. I've also said that it feels like I have just ingested railroad spikes dipped in battery acid! I was diagnosed with Crohn's at age 29 (41 now). I lost count after a dozen colonoscopies. Yup--I've had anesthesia with mine, too. It's the way to go, baby! I'm sooooo sorry that you are going thru this--never never feel like you are alone. This is a great bunch of people! I just had my first surgery 4 weeks ago (I have an ileostomy now). Anyway, you'll get thru this. You got a little one to keep you focused. That's exactly how I got thru all I've endured--my 2 boys! Hope you can find remission or the right med soon. Good luck on school, too. My, you have a lot on your plate. Does a gastro or a surgeon do your scopes? Sending you lots of good wishes and prayers.:rosette1: Dana

Dear Snap and Angrybird,
Thanks so much for the info. Angrybird I have never heard of those shakes. Where do u get them? And Snap, a my GI doc does my scopes. Usually at his office but this time will be at the hospital because of the anesthesia. I'm almost wondering would my quality of life be better if they just took it all out and gave me a colostomy? Of course I know nothing about that or if they could even do that at this point. But I do know that one surgery a year is too much. Plus, I haven't mentioned this before but I have had a severe addiction to pain pills. I did fine after my surg last yr but I'm worried. My husband knows about my problem but he just won't allow me to have any. And when it's this bad I need something. That's another reason it probay freaks him out to hear me talk about flares and pain. I had two resections 30 days apart last year and did great with the pain meds, only taking what was prescribed. My problem is, they've fed me like candy since I was 18. So of course, now, 2 pills doesn't work.

This is a wonderful forum to connect with people who relate in some way. It's terrible to feel like a burden and to feel guilty for being sick, I just posted something like this the other day. I am also married and have a 20 month old son, and they are both amazing and my biggest advocates. Like you said its hard for my husband to not just worry about me, but then his job and the last time I was in the hospital he was running around like a chicken with his head cut off!! So make a long story short... I know how you feel, I'm right there with you, and know that the support I have recieved from reading this forum and the feed back from the other members for sure makes you feel not so alone. I hope you are able to find a little peace and the extra support we all need! ((((HUGS))))

Hey Beth, dunno about them removing your colon--but perhaps you can discuss that with your Dr. The disease is so different in everyone--but we can allllll relate to the pain, blood, surgeries, scopes, etc. Totally understandable about the pain pill dependency---we're all human beings that just want to be pain-free and to be able to function well! I'll assume that non-narcotic pain pills are useless? Maybe get a referral to a general or colorectal surgeon after your scope---just to talk? Dunno--just throwing out ideas. Is there a university hospital in close proximity to where you live? Try to hang in there!:Flower: Dana

Hi Beth, the milkshakes are something you get under prescription and for me it was sorted by the dietician at the hospital. Perhaps get onto your IBD nurse to see if is something they could look into for you? You also get little tubs of flavourings you can add to make it more tolerable. Drank them cold from the fridge and found that they actually tasted quite nice.