Having a hard time with Crohns...support and help needed!

[Rj1234]

Hi everyone! I'm new to this forum and I think it's about time for me to start connecting with people in the same boat as me. I take pentasa 500 mg 4x a day and I have been doing so for 7 months since I have been diagnosed. There are times where I can't stand my medicine and hate to even look at it. I have a mild case of crohns and for the most part I am okay most of the time. However, there are times where I sit for a week straight feeling horrible! In addition to crohns I also have a stomach ulcer which adds to my pain. Does anyone else also have a stomach ulcer???

I have times where my mouth gets filled with saliva and I have to spit it out, then I start throwing up everything in my stomach until there is nothing left anymore. I'm having a really hard time with crohns and need some support from people with more experience than me. When I have stomach pains it feels almost unbearable and I sometimes becomes light headed and have a hard time breathing.

And issue that I am really having has to do with food. I get really hungry at times but I have absolutely no appetite for food or wanting to eat even though I'm starving. Then when I start to eat my stomach hurts almost immediately and I can't finish eating. Does anyone have this problem and what things could I do???? Please help with this.

I also have an extremely hard time with my weight. Since brig diagnosed with crohns I have lost about 15 pounds and I am dying to gain that weight back but I can't seen to gain even a pound. I know my eating is not well at times but when I am feeling okay I do eat, and I eat like nothing is wrong with me and it feels great. Does anyone have a problem with weight like I do or have any tips regarding weight?

I know this is a lot to say in one thread but it would mean the WORLD for some feedback! Thanks so much everyone and may god keep us all strong!

 

[GutlessWonder86]

hi rj, fellow female crohnie since the age of 12. Have you talked to your GI about what you just stated here? You need to ask him for another treatment if the current one isn't working.

As for acid, pain, not being able to eat, again, talk to your GI as he is the one who can really address this. For me, when I had too much acid, I was Rxed Zegerid which helped. They have it OTC which is cheaper than the Rx. My GI's nurse told me that the Zegerid OTC is stronger than Aciphex, Prilosec, OTC etc. I've tried it when my Rx Zegerid ran out and it did the trick for me. The Sunday paper will usually have coupons every few months plus I'd ask my friends to mail me them.

As for pain, you have a right to be made comfortable when flaring. Ask for some sort of pain relief such as Tylenol 3, Lortab, Percocet, something along those lines.

Hope this helps. Oh, as for food, low residue, along the lines of baby food if it hurts to eat regular stuff or even something like rice, applesauce, toast, etc. Better yet, call the nearest hospital's dietary dept. and ask to meet with a dietician who is well versed in dealing with patients who have GI disorders. I did that when I had pancreatitis and she was a God send.

Take care. Gutless Wonderwoman

 

[Jennifer]

Hi Rj1234 and welcome to the forum!

Did you notice improvement with the Pentasa or have things stayed the same or gotten worse? You said that you can't stand your meds and hate to even look at them which makes me think that maybe its not working out. Talk to your GI about another treatment plan.

When was your last endoscopy/upper GI scope? You may be dealing with some type of acid reflux which can cause ulcers along with other issues. Might want to have further testing done and get a prescription to help with that.

As for the vomiting, that's no good. Definitely need to talk to your GI about that. There could be a narrowing causing food and drink to back up which can make you vomit. Yet I have hear other members on here talk about how they continue to heave even though its not necessary. I don't remember the cause but it could again be upper GI related and you'll want to run that by your GI as well.

As suggested smaller and more frequent meals along with the low residue or BRAT diet may be beneficial but there's also Enteral nutrition which has had success in gaining remission, weight gain along with giving you much needed nutrition. Talk to your GI about getting it or some other treatment plan soon and keep us posted!

 

[David]

Hi Rj and welcome to the community

I'm sorry you're struggling at the moment, that's tough

As already mentioned, if you're not doing well with the Pentasa, talk to your doctor. Pentasa isn't really that good of a medication for Crohn's Disease so if you're not responding well to it, there's definitely better medications out there.

I'm thinking you're also experiencing some malabsorption/deficiencies. I'd definitely request that they test your vitamin B12, magnesium, vitamin D, and do an iron panel on you. Deficiencies like those are common in people with Crohn's and can cause many of the symptoms you speak of.

I agree with Crabby about the enteral nutrition as well. That could help a lot and is worth researching and discussing with your doctor.

Again, welcome!

 

[acheallova]

Hey Rj,
Speaking to your GI is the best, and we are always here for support and questions.
There is a few things you might want to look into with ur doc.... 1. Anti- nausea med, i have severe nausea n vomiting with my crohns and am on Zofran odt for that 2. For the ulcer, like mentioned above- a PPI ( proton pump inhibitor) for acid. I'm on Protonix n it really helps. I dropped from 132 to 87 n finally after 7 months stabilized at 95. I can't even stomach the smell of food, thus i drink a lot of gatorade ( for electrolytes) n ensure for nutrician. I can finally get some rice down, mashed tatoes or mid light foods. NO dairy. I'm trying to follow the " cave man" diet when i do eat. Boost is also an option.
Good luck, keep us updated. Hope you get feeling better soon! Muah- hugs-

 

[acheallova]

Oh, for pain a heating pad works wonders or a hot water bottle.
- hugs-

 

[Bond007]

So I know exactly how you feel in everything you described. Zofran you can take for nausea, and hopefully that will help. If you are like me and many others, zofran ran might not be strong enough, or just not work at all (like for me). I'm going to suggest cannabis. For many years I've had those problems and nothing helped. Until cannabis. And it works almost immediately at taking away nausea. you would take it as soon as you notice that extra saliva building, or before meals if thats what triggers it. It will give you an appetite too and might get a bit with that weight gain. If you decide to ever try it, I suggest starting with very very little so you can get use to it. Of course finding a good GI that help you is key, but sometimes you will have to be proactive. Good luck!