First time post, long time suffering

[Elduderino909]

Hi everybody, I’ve been reading the forum for the past 2 years and finally thought I’d join to ask for some advice and maybe support.

I’ve had Crohn’s disease now for the past 14 years with only 3 major flare ups, the first 2 resolved with heavy prednisone along with mesalamine enemas nightly for 5 years then when that stopped working I switched to Remicade and 6MP for another 4 years or relatively crohns free living.

My crohns has been limited (thankfully?) to the last 12cm of my colon, but my most recent flare, which started Dec. 2015 has not stopped. For the first 9 months I couldn’t walk without running to the bathroom, I had extreme throbbing pain nonstop, even farting hurt. I was switched off Remicade and put on Entyvio and Imuran which did absolutely nothing. Then I tried LDN which also did nothing, then I got married and that seemed to make it worse. Then after all that I ended up with a fistula plus perianal abscess that landed me in the hospital for a week.

So now it’s Jan. 2018 and I’m currently on 12mg MTX and 80mg weekly Humira. While the throbbing pain is gone I’m still have bloody diarrhea a couple times a day. I know I should probably just be grateful I only have to go a couple times a day, but is bleeding this long normal? Is this typical among most folks on here? My doctor doesn’t seem concerned at all, only unless I faint. It just doesn’t seem right to always just bleed. Any advice on ways to make it stop would be greatly appreciated!

 

[ronroush7]

Welcome. That doesn't sound good to me. I mught consider à second opinion.

 

[Trysha]

You should not be suffering a continued blood loss and you need a further evaluation by a good gastroenterologist as soon as possible.
Don’t minimize your symptoms when speaking with doctors....this is seriously needing attention.
I found the foam enemas helped a lot when I had bleeding and multiple bums
Please see a GI specialist soon and let us know how you get on with this.
Feel better soon
Trysha

 

[Elduderino909]

Thanks guys.

I’ve been seeing 2 GI doctors and one is the department head, and while I’m not losing significant amounts of blood, it’s just a constant long simmering type flare up. I’ve read a few posts on here and it seems like people either have short intense flare ups and some (like me) have flare ups that just keep going on and on.

I’ve been on Wellbutrin for the past few weeks also, kinda a last ditch effort before increasing the MTX to 25mg weekly or Stelara, or who-knows-what. I’ve been using court enemas nightly and it’s helping and also taking a Cipro/Flagyl combo for the next 10 days which normally helps a little.

I’m just very depressed about all of it. For the past 2 years I feel like I’ve been barely limping along. I’ve lost friends, family and others who just think I’m exaggerating my problems, which just adds to the stress. I’ve just reached my wits end with all of this.

 

[valleysangel92]

Hello, welcome to the forum

I'm sorry I'm late into this, but I'm glad you've found the forum.

Bleeding is a known symptom of Crohns, but that doesn't make it normal as such. Your doctor should definitely be more interested and at the very least needs to take some blood to check that it hasn't made you anaemic.

I would suggest talking to your doctor about changing your treatment long term as what you're currently taking obviously isn't working as well as it should and its unfair to expect you to just put up with this. If your doctor is unwilling to even discuss other treatment options then it's probably time to look for a new one.

I would also suggest having some testing done to see whats going on inside, you could start with some simple stool tests and then some imaging like an MRI, but ultimately I think you need a scope to work out exactly where all this blood is coming from as you may have something else going on inside like an undetected fistula.

It's no surprise you feel depressed with all this. I totally get the feeling of having to just limp along and put up with whatever comes your way. It took me a long time to get a diagnosis and a lot of fighting to get the level of treatment I needed. Please don't feel that you're alone, there's lots of people here who understand what you're going through and most of us have been where you are now.

Please feel free to come and rant any time you need. There's no such thing as a silly question and none of us will judge you, we're all in the same boat.

 

[erk]

I’m just very depressed about all of it. For the past 2 years I feel like I’ve been barely limping along. I’ve lost friends, family and others who just think I’m exaggerating my problems, which just adds to the stress. I’ve just reached my wits end with all of this.

I'm really sorry to read about all this, it feels like a betrayal when you are suffering for people who are supposed to be supportive, instead respond dismissively. I'm not sure where it comes from, just a lack of knowledge/understanding or a lack of empathy. But I think you are better off without these people in the long run.

I agree with others, I hope you can talk to your GI in order to address the bleeding, good luck!

 

[Elduderino909]

Thanks everyone for the replies and support. I guess I’d feel better if I knew some of you bleed every day, so at least it’s somewhat normal. I got my blood tested and I’m not anemic and even my inflammation markers show no inflammation, but my GI said that’s common especially for those of us with lower level proctits.

On that note, has anybody used any enemas or alternative therapy’s that actually work? I’m not a huge proponent of naturopaths as I’ve been ripped off and have seen many others get scammed by them, but any alternatives that you all have used that actually worked would be great to try out.

 

[valleysangel92]

I have heard of people who have bled everyday, so its not unheard of or anything, but it definitely needs more active investigation and treatment as it shouldn't be allowed to go on for a prolonged period due to the complications that can arise. To be honest I'm very surprised your gi isn't more interested in at least finding out the exact cause of the bleeding, if I was bleeding daily for an extended period my team wouldn't stop until they knew why and had a way to fix it. Bloods aren't a great indicator for inflammation in IBD, mine are almost always normal unless I'm very sick, so I'd be pushing for some other types of investigation.

Has your doctor at least examined the back passage? It may be that its something simple like fissures (small tears in the lining of the back passage) which would make sense if you only bleed when you have a bowel movement, and which can sometimes be treated with topical creams.

I know that a few people use either steroid enemas or enemas with something called mesalazine in them, and have had some success with these along side the oral/iv medications but I don't know about alternative treatments as such.

Here's a link to some information on pred enemas - https://patient.info/medicine/prednisolone-rectal-foam-enema-and-suppositories-predsol

This is for mesalazine, I know it says for children but its basically the same for adults - https://www.medicinesforchildren.org.uk/mesalazine-liquid-enema-inflammatory-bowel-disease

 

[ronroush7]

Make syre the doctor stays on top of everything. I don't think it happens too often hut I had a flare that got really bad and i bled for three months. I wish you all the best. Let us know how you are.

 

[erk]

Meant to say I am taking pentasa suppositories to address a bleeding issue I had for several months, I've only got two days left of the suppositories and they've worked really well for me, perhaps that could be an option for you?
I agree with valleysangel92 it would be good to get that aspect in particular checked out.

 

[Elduderino909]

Thanks again all for the great input.

I used to take mesalamine enemas for 5 years, but they stopped working. Nowadays if I use one my symptoms get worse, so my dr gave me court enemas. I’ve been taking them “as needed” for the past 2 years, but now I’m starting to think the 1 a night isint enough and maybe I should be doing 2 a day.

Do many people on here have good experiences with cort enemas? I also have the 25mg cort suppositories which kinda help, but not as good as the 100mg cort enemas. It seems like the obvious thing would be more rectal meds. I’m also now taking cipro and flagyl for an abscess, which oddly enough is helping the crohns symptoms.

Thanks again all for the help and advice!