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Coping with Crohn's - My story

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Ashers12

Hello, my name is Ashlee. I am 22 years old and I was diagnosed with Crohn's (diarrhea) almost 2 years ago but have had symptoms for over 3 years. I first started to notice something was wrong when I would have to use the bathroom over 20 times a day. This went on to include blood in my stools and extreme weight loss. (Which was sort of a bless in disguise) I started my crohns journey at a whooping 360lbs. Within the year before my diagnosis I had lost 80lbs. I didnt have any insurance so going to see a doctor was out of the question. I didn't decide to go until a close friend recommended a GI. I applied for financial assistance and made an appointment. After looking me over he decided that a colonoscopy would be my best option so that he could figure out exactly what was wrong and make the proper diagnosis.

Being able to put a name to what had been ailing me for so long felt, at the time, like a relief. Now I just view it as a curse. I've been off and on prednisone for these last two years and on Humira for the majority. I was on azathioprine for a while until it started making my stomach hurt, so I was taken off it.

I've been curious. These last couple years I have had 3 different incidents where I have become so constipated for weeks on end that I cannot do anything. I am currently going through the third incident right now. I am wondering what helps? I have tried miralax, dulcolax, ex lax and even magnesium citrate. Nothing has quite broken it up and cleared me out. I am in an immense amount of pain whenever I try to pass a BM, I've got cramps that last 30 seconds or 30 minutes. I barely pass gas and my GI doesn't seem the least bit concerned. To top it all off I'm scheduled for a colonoscopy in 4 days!! I'm worried I won't be able to cleanse during my prep period. Any suggestions?

Thank you for reading.
 
Grumbletum

Grumbletum

Hi Ashlee
Welcome to the forum. I can so relate to that relief followed by the realisation! I think when I was first diagnosed I kind of expected to be given a magic pill and get better really quickly once they knew it was Crohn's. Didn't realise that with most people, me included, it can take some time to get on the right med regime and for things to improve.
Sorry I can't really recommend anything for the constipation as it's not something I get very often. Having said that, I'd noticed recently it was taking me a long time to go, after the initial urge to go and that my stools seemed to have narrowed. Had a colonoscopy recently and doc found a large stricture at my resection site that she'll deal with when I'm not so inflamed.
I think the prep will probably get things going - that stuff is rocket fuel!! Hope it all goes OK and that you'll let us know what the verdict is.
 
ronroush7

ronroush7

Welcome. Have you tried Phillips Milk of Magnesia? Not sure if it will work but my mother used to give it to me when I was a kid before I was diagnosed with Crohn's. Like it was said above, please let us know how the colonoscopy goes.
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
Im very positive the colonoscopy preparation will clean your bowels properly. Constipation can be a sign of disease activity or other issues in rectum. Scope comes at the right time for you. Good luck!

maybe you can inquire about natural prebiotic fiber in the form of inuline chicoree root to your doctor or pharmacist. This is often used to help for bowel regularity and maintain good equilibrium in gut flora. This supplement is recommended in the IBD-AID diet (link in my signature). I take it every day and I really believe in its benefits.
 
EastCoast902

EastCoast902

I too, have similar issues with constipation- after 2 years of daily clean outs- which I miss!! I have weekly bouts of constipation lasting 3 or 4 days, then back to 3 to 6 BM's a day for 2 or 3 days. I "blame" it on the drugs that are keeping my inflammation under control. I have learned to avoid foods that bind- cheese etc.

I had a colonoscopy this week and prep did the trick- although it was well after the 2nd dose before I went and by that time I was in extreme discomfort and could not get down the last mouthful without bringing it back up. I would recommend that you consume very soft bland foods now as you prepare for the scope. It should make the clean out easier. Broths, jello, even Ensure type drinks, puddings etc.

Post colonoscopy- I feel great- no pain and sub consciously I am avoiding food to avoid the pain that goes along with digesting it. But am slowly introducing a bland diet to ensure the process doesn't get bogged down again.

Although newly diagnosed, I have come to accept reluctantly, that my diet is now very limited and I have to do what is best for my quality of life. Currently on Entocort and moving to high loading Humira in a couple of weeks.
 
ronroush7

ronroush7

EastCoast902 said:
I too, have similar issues with constipation- after 2 years of daily clean outs- which I miss!! I have weekly bouts of constipation lasting 3 or 4 days, then back to 3 to 6 BM's a day for 2 or 3 days. I "blame" it on the drugs that are keeping my inflammation under control. I have learned to avoid foods that bind- cheese etc.

I had a colonoscopy this week and prep did the trick- although it was well after the 2nd dose before I went and by that time I was in extreme discomfort and could not get down the last mouthful without bringing it back up. I would recommend that you consume very soft bland foods now as you prepare for the scope. It should make the clean out easier. Broths, jello, even Ensure type drinks, puddings etc.

Post colonoscopy- I feel great- no pain and sub consciously I am avoiding food to avoid the pain that goes along with digesting it. But am slowly introducing a bland diet to ensure the process doesn't get bogged down again.

Although newly diagnosed, I have come to accept reluctantly, that my diet is now very limited and I have to do what is best for my quality of life. Currently on Entocort and moving to high loading Humira in a couple of weeks.
Click to expand...
Best to you. Just started Humira myself.
 
A

Ashers12

Thank you to everyone who took the time to read and welcome me to the forum!
Today was the big day as far as my colonoscopy. I am happy to say that my prep cleanse went well and whatever blockage I had from previous constipation came out! The procedure itself went just as well. My GI did find more inflammation this time compared to my last scope 2 years ago. He also found more polyps which he is doing byopsys on. The newest thing he found was an ulcer right at my anus. Apparently it looked pretty bad, I opted out to seeing it (he showed my boyfriend and family members that were at the hospital with me).
Unfortunately, he couldn't tell me why I've been having these constipated incidents these last couple years. The best guess he had was that it's more than likely just me and my body. For whatever reason. - I was pretty bummed about that it made me mad that there just wasn't a real answer... but dealing with Crohn's that's just something I'm getting used to. He's going to have me take 1/2 to 1 cap full of miralax daily to try and stop any future incidents!
His plan of action with everything else is to increase my Humira dose from 1 shot every other week, to 1 shot every week. I have a feeling I'm gonna be pretty sore! I hate doing those shots. Hopefully soon I'll be off the prednisone as well!
Again, thank you to everyone who commented! I really appreciate it all. It helps when you feel like you aren't so alone battling this disease. Much love, guys!

-Ashlee. :)
 
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