Crohn's in stomach?

[Hopefullx3]

I have put my story on here a long time ago but I have a few questions for anyone who would like to give me there input. I now have crohns in my stomach and don't know anyone that does. What happens to me every night after I eat is, that I start to get pains higher up in my stomach area, then I start to burn up really bad and start to sweat, my face turns red and my ears feel like someone lite a match in them. My husband complains he can feel the heat coming off me just sitting near me. I then start feeling very sick to my stomach along with very loud active bowel sounds that can be heard across the room. I usually do one of two things. 1. Run to the bathroom within 20 to 30 minutes of eating with everything running through me like water for anywhere from 5 to 15 times depending on how much I ate in that one meal. (i only eat one small meal every 24 - 30 hours) or I would be in the bathroom all day. 2. Bloat very badly with cramps for hours and then have extreme pain in my colon until I have finally gone to the bathroom. I have a spastic colon and I have pain in my rectum when going to the bathroom sometimes that feels like someone has stabbed my anus with a knife. Anyone else get the severe burning up, and does anyone else have crohns in there stomach and can tell me there stories about what they deal with. It seems to be getting worse in my stomach and I am worried about what they can do for me.

I am currently taken off all medication because my body reacts extrememly negetive to them. I am now going to see a new specialist in 2 weeks at a big hospital. I have been on a list of medications over the years. OK hear goes.

Prednisone, Pentasa, Imuran, Entocort, Salofalk, Ciprofloxacin.
As well as, Cymbalta for fibromyalgia (didnt work) methotrexate (crushed disks in back) Nexium, Dexilant, Tecta,(stomach) relpax (migraines) imodium, novo chloromine, ibergast, milk of magnesia,(bowels) tylenol arthritis, tylenol #with codine, percocets (pain)
Nothing has ever worked for me just made me really sick and have blood in my bowel movements. The prednisone made it look like I was having a seizure.

 

[badbelly]

I'm sorry to hear you have been in such pain and are having to live w/ all those symptoms. Have you tried a TNF inhibitor?

There are also various Crohn's diets that have worked for some people. And food sensitivity testing with the help of a nutritionist. Problem is they take a long time to figure out and may not work. Hopefully there is still a medication out there that can help you.

 

[SarahBear]

Hi, Hopefull! I'm sorry to hear what you're going through. It sounds very frustrating. Unfortunately, I don't have any experience with this, but I'm going to re-title your thread and move it into the General section so that more people will see it.

:hug: I hope things get better for you soon!

 

[fayee]

It hasn't been confirmed by a doctor but I believe setting is up with my stomach as well. Depending on what I eat (though mostly everything effects it) I have intense sharp pains in my stomach a few min after eating.

I've found almond milk really soothes the pain for me.

Good luck!

 

[Justin1982]

I believe there are Cleveland Clinic's in Canada. Might I suggest a visit? I saw at least a dozen doctors before finding ones willing to listen at Cleveland Clinic in Ohio. Quack after Quack called me a hypochondriac or said IBS.

Cleveland Clinic has been a godsend.

Apparently, over 120 pounds of weight loss (I was obese) from 230 to 110, complaints of extreme fatigue, nausea, inability to hold down food, nonstop trips to the restroom, extreme pain (kidney was filled with LOTS of stones), low potassium, anemia, and low vitamin d meant nothing. All in my head...

I hate to say that there are plenty of incompetent doctors out there, but it's true. You need to see Top Docs to get help. Now, Cleveland Clinic is trying to undo 15-20 years of damage from the neglectful care I'd received.

DX: Crohn's of Terminal Ileum

Past 10 Months: 22 Trips to Cleveland. 7 Surgeries Related to Kidney Stones. 4 Emergency Room Visits. Loads of Medications to (Entorcort EC, Potassium, Vitamin D, etc)....

Good Luck.

 

[lgpcarter]

We have some AMAZING GIs here in Ontario. I've been treated in Toronto and Kingston and am happy to PM with you about hospitals and doctors.

I am afraid I don't have any advice, as I have never experienced anything like that. Just lots of sympathy and support.

What about Boost or Ensure instead of food?

 

[durwardian]

Definately need to find a panel of doctors to look at you very closely. Have you ever vomited after eating, or just the toilet issues? Is it the food you just ate that comes out or digested stuff? I am wondering now about what you eat, how often, which things are worse than others? Definately look for stones, parasites, rule out other diseases. I was put on a strong tranquilizer back in my stomach pain days. It worked for a while, but not for the reason the doctor thought.

 

[my little penguin]

DS has crohn's from top to bottom including the stomach .
He also gets rectal spasms / rectal prolapse etc..
Biologics were the only thing that has helped him.
He failed all other meds
Remicade worked well as has humira now but he still needs and h2 blocker to keep everything in check .

Hope the new doc has some answers - I would see how the Gi feels about biologics .

 

[PVail]

Hi Hopefullx3
Thats an awful lot to deal with. For four years now I have mild to moderate Crohns and have only recently had upper stomach problems. I was having terrible sweats and supper stomach pain after eating, beltching all the time , feeling really nauseus and when I went to get checked, it turned out I also had a H pylori ( helicobactor stomach infection ) . I had to take a coctail of antibiotics and ant acids to get it under control. Unfortunatley it appears I now have stomach ulcers as a result of the infection ,so I have to take Omeprazole all the time as well as my own meds.
I was always worried that my Crohns/IBD was spreading to my stomach but thats not what it turned out to be .
Unfortunatly my Doctor is a dismissive ******* and refuses to up my meds to get things sorted but I guess I should be thankful for something.
Maybe you have a infection like this along with your Crohns, apparently its very common and very hard to shift .
Best of luck with your treatment.
Peter

 

[Hopefullx3]

I came back negative for H-pylori and did test to see if it was some sort of infection or bacteria and it wasn't. He said my stomach was not normal looking and it was inflammed as well the ulcer were not normal looking. They did biopsy's and it turned out to be positive for active crohns in the stomach. I was on medication to help soothe my stomach but it didn't do anything. I don't eat much only once every 24-30 hours because it makes me so sick. I have started to just eat soup or mashed potatoes, apple sauce, jello anything that is easier to go down, but it still goes through me the same. And yes I have thrown up from it. I have a very thick greasy substance that come up in my throat all the time as well as burping and chest pain from the pressure. I have tried everything under the sun over the past 17 years in the way of diet. Removing item, adding items, eating all natural, having just liquids, supplementing nothing has worked. I have worked with two different nutritonist and still not any better. One day I can eat something and not be to bad and the next day eat the same thing and be deathly ill. I only eat to stay alive and because my husband gets upset if I don't eat. I stopped eating for 3 weeks and lost about 18 lbs in that time. I was rushed to the hospital with my heart racing and passing out. I have low blood pressure alot. I have once again started to have the dizzy spells, weakness in my limbs, seeing stars, my vision goes funny, and have a hard time making it standing for very long. I would love to try TPN and just get some rest but I heard it can cost alot. I am going to stop working soon because my body cant handle it and I am worried I wont be able to afford it.
Anyone know how much it costs.

 

[durwardian]

If you still have insurance it won't be hard for the doc to write a script for supplemental nutrition. Talk to them seriously about another way to get nutrition.

 

[jlm]

I have crohns in my duodenum and pyloris. This is a new thing for me. I've been dealing with this for about a year. The issue it causes for me is. Stricture cause from ulcers and inflammation. I don't have pain but after I eat I get very bloated and nauseous and uncomfortable. The only way to stop this feeling is to throw up. This was happening almost every night multple times a week plus going to the bathroom all night. I literally get no sleep. But a few weeks ago my GI put in a mesh stent, which has definitely helped but not 100%. I'm currently in the middle of stopping Humira to switch to a different biologic. And will be meeting with a surgeon just to case. I've never had crohns this high up and my GI says it's super uncommon. If only I could be this lucky when I buy lottery tickets.

 

[Johnnysmom]

My son has crohn's in his stomach as well. He was given a PPI (proton pump inhibitor) and it really helped with the heart burn pain. He was also put on Prednisone and 6mp but we were told the PPI was mainly to treat the stomach. He was on it about 6 months and then was able to wean off.

I really hope you are feeling better soon. (((Hugs)))

 

[Hopefullx3]

I don't have any coverage at all. The company I work for goes through an insurance type company and they wouldn't take me on for medical because I was already sick. Kind of like when we bought our house I couldn't get insurance on myself for if I die then the house would be paid for. They sent me my money back and said they would not cover me. When I go off of work I was told to apply to ODSP and they will help with my medical, I have paid for everything out of my own pocket. This is why I am so worried about stopping work, but the doctor has told me it is time to stop, my body is not tolerating it any more. my bones are weak and now that I have crushed two disk in my back I suffer in more pain then just my crohn's. Thanks everyone. I must say that I actually cried over how many people are so supportive on here trying to help, and to have others that understand is like winning the lottery to me. I have been so alone for so long on this. My husband is great but he says I will never say I understand because I don't have it and can't imagine what it feels like. I love him so much. And yes I heard it is less than 5% of all people with crohns get it in there stomach. Yeah Us!!

 

[durwardian]

ODSP should be a help. Yes to applying for disability. Thank you for trying to work and pay yourself. The public really should know how many of us can't get insurance and pay as we can. We get treated like garbage in this weird middle of the road place. Get the help you need.

 

[jlm]

You'll be off soon. Just make sure you get a note from your doctor. You'll be relieved I promise once you have some time off