Stomach ulcers?

[Camp1997]

Hi everyone,

I have a mouth full of ulcers and yesterday was rushed into the hospital with extreme nausea, large amounts of sweating and a very severe burning feeling in my lower stomach. Just wondering if anyone has had stomach ulcers and how it felt?

Of course the doctor sent me home with an acid reducer and had no idea what was going on after 6 hours of waiting there. Just feeling frustrated I’ve had the feeling before just not as bad...and it always comes along when I have mouth ulcers!

[Camp1997]

So sorry you are going through this, let me know how your test goes I am very curious as to what comes back for you. It’s a very awful pain!

[LLocke]

Yes i get stomach issues with Behcets. And intestine issues and bowel issues. All extremely painful. Between low level 3 up to a Level 9 of pain.

Side note.

Yes i have had level 10 pain. Thats when i had endometrial cancer. And they removed everything. Then gave me meds i told them did not work for me. Ended up as if i had no pain meds that first night. Went in and out of conciousness shaking from the severe pain.

Hurt so much it makes you pass out. Then wakes you immediately from the intense pain. Then seconds later makes you pass out again. All night long.

Thats a level 10 to me. Where it knockes you out and then immediately wakes you up. Endlessly.

Back to Behcets sores in the stomach and intestines.

No stomach ulcer meds touches it. Cause its not a regular peptic ulcer. Its Behcets related.

In the past many years ago. Before i had Behcets, i did have stomach ulcers. They are not the same. I thought stomach ulcers were bad. These Behcets pains in my abdomen do not compare. Behcets stomach and intestine sores are way more painfull than the ulcers i was diagnosed with in the past.

My Immuno Dr. put me on Sulfasalazine for this.

It has been a miracle for this problem. It does not take care of it completely.

But i dread ever going off it. It terrifies me what the pain will get to again.

Absolute terror.

So very sorry you are dealing with this.

[Frustrated2 in reply to LLocke]

What type of meds have you been on for the stomach cramps?

I am currently have pain there my level is range from 6-9. Doubled over dropped to my knees pain. Bloated,

Cramps, diarrhea, nausea (but since my Hill hital hernia repair in 2004 I can’t throw up, I just dry heave and saliva in my mouth)

My Gastro dr had me do a Ct Enterography on last Friday (waiting for his next step)

He is ordering a colonoscopy again (had one 6/14/18)

He prescribed me Levsin sublingual pills to take 4 times a day which just take pain to a 5-8 but I can’t get comfortable and my stomach burns aches and cramps when anything liquids/food goes through me.

I’ve had this before but this time is my worse. This flare started middle of April.

I’m currently on colchicine and plaquenil and rheumatologist leaning towards Behcet’s.

Any suggestions??

[LLocke in reply to Frustrated2]

Hello Frustraited2.

My Doctor (Zone) for my Behcets has me on Sulgasalazine for the intestine problems from Behcets that i get.

This helps a lot with the intestine pain. But it took many weeks and a slow up in the dose before it got me to my current relief of pain and problems.

I still have issues with it. But it is much improved.

I have also had a few colonoscopies so far. No major problems found during the colonoscopies from the Behcets. Sores seems to like to hide\heal just before we see Doctors. Nice. But frustraiting to get the doctors to see them in person.

Hence all the photos and videos we take. How can we do that for the inside stuff though.

I have been on the Sulfasalazine for a few years now. 2 pills in the morning and 2 pills in the evening. Each pill is 500 mg tablet.

I have to have blood tests done every couple of months to monitor my blood. To make sure the sulfasalazine does not make me go to low on some of the areas.

I never bother to memorize what parts it negatively effects.

So far i have had no problems with it.

It has been a life saver.

It also helps a little with my joint pain. Not a lot. Just a little. But it was a noticeable improvement.

Skins sores improved. Tongue and mouth sores. Everything really.

But the intense intestine pain Sulfasalazine helped the most for that.

I Hope this information helps you or anyone interested.

[LLocke in reply to LLocke]

Hello again Frustrated2.

I forgot to mention. None of my doctors have given me anything directly for pain or cramps or bloating. Nothing.

Just medicine to help controll this disease. And specific for the intestine stuff is Sulfasalazine. If your body can tolerate it.

Everyone is different what actually helps them. And everyone is different whether the medicine reacts badly for them.

I have been blessed to only have to go through a few options of medicine that are supposed to help before this one clearly made the difference.

And so far also good news it keeps helping and my body does not react badly to it.

That is my worst fear now. To go back to that intense pain if they have to take me off of the Sulfasalazine for any reason.

[Frustrated2 in reply to LLocke]

Thank you Llocke for replying.

I’m wondering what other medication can be used I have a Sulfa allergy. 🥴

Is there any foods/drinks that you can tolerate better?

Right now everything hurts when I eat or drink.

This is by far the worse flare I’ve had in my gut. Can’t get in a comfortable place to lay, sit either.

I’ve been battling this since middle of April but last week it hit at its worse.

[LLocke in reply to Frustrated2]

Hello Frustrated2.

Sulfasalazine is in the disease-modifying antirheumatic drugs (DMARDs).

Is otherwords it is used to treat autoimmune diseases.

DMARDS online i found listed are as follows.

abatacept

adalimumab

anakinra

azathioprine

chloroquine

ciclosporin

D-penicillamine

etanercept

golimumab

gold salts (sodium aurothiomalate, auranofin)

hydroxychloroquine

infliximab

leflunomide

methotrexate

minocycline

rituximab

sulfasalazine

tocilizumab

tofacitinib

It then says

"When treatment with DMARDs fails, cyclophosphamide or steroid pulse therapy is often used to stabilise uncontrolled autoimmune disease.

Should DMARDs fail, tocilizumab can be used for tumor necrosis factor (TNF) inhibitor treatments."

This is only the list online for DMARDS.

There a a lot more drugs doctors use to treat autoimmune diseases that i did not list.

Sulfasalazine is one of the listed meds.

as disease-modifying antirheumatic drugs. DMARD.

I dont know if others on this list are also a sulfa drug. You would have to look up each of them.

Sulfasalazine obviously is. The beginning is sulfa.

Online it also says if you have an allergy to sulfa. You should not take it.

As long as your doctor puts you on something for an autoimmune disease it will likely help the intestine pain. That is if the intestine problem comes from an autoimmune disease.

The first thing Dr. Zone tried for me did nothing.

As it was not for autoimmune diseases. That made sense.

The second thing he tried. It helped just a little. I did see improvement. But not a lot.

The 3rd thing he tried helped me. Thats the Sulfasalazine.

Each person something different helps. Or a combination of somethings.

I am very gratefull the 3rd thing worked.

Thats from Dr. Zone anyway.

I had been seeing doctors for this intestine thing since i was 39. Lots of tests. Looking to see if my cancer was back. All that. Trying months on stuff for ulcers. On and on tests. I first saw Dr. Zone in mid 2014 i think. I would have been 44. I am 49 now.

Nothing helped.

Not untill the other symptoms of Behcets started did i even think it was related.

Clearly it is related for me.

Because the Dr i saw for Behcets (Zone) and the things he did for my Behcets vastly helped the intestine pain. He told me my intestine problems are deffinately part of my Behcets symptoms.

With that In mind. The intestine pain is likely my first symptom.

And it was probably irritated from my uterine cancer removal. Because thats when it started. Right after that surgery.

It was a mystery to my medical doctors for years untill i saw the specialist for immune diseases. Dr. Zone.

I cant say what will help your intestine pain.

Likely one of the drugs used to shut down your immune system from an autoimmune disease. Thats if your problem is immune disease related.

Deffinately talk to your doctor as to what might help you.

Dont get despondent if the first few you get put on do not work.

Relief is possable.

I very much hope you get the help you need.

I feel for you.

That pain is excruciating.

Just excruciating.

As to food. Nothing worked. For example I tried for 9 months to take out all salicylic acids. As i thought perhaps i had an allergy to aspirin that was causing all this.

I took out one item at a time. Till i had nothing left to take out. I avoided even touching things incase a minute does of something was setting these symptoms off.

For me. No food or drink removal stopped my symptoms. Or soaps. Or cleaners. Or laundry detergent. Or tooth paste. Nothing.

Non eating only helped because there was less stuff going down my intestines that were clearly inflamed and or had wounds in them just like my mouth.

Helped so very little though. As i am sure you are very aware.

Our intestines naturally move. Whether we have food in them or not. And that movement when they are tender and swollen and have ulcers in them is so very intense.

Undescribably to those who have not experienced it.

I am so very sorry to tell you i have no answer as to food intake or liquid intake.

Some here talking about there experiences have mentioned that a specific diet had helped reduce their symptoms. I am very glad for them. I wish i had found that for me. Very much wish.

I truly believe that autoummune diseases are very individual. As it really is our own immune system attacking us.

That makes sense that different things help different people.

If removal of specific foods helps you. I hope that is the case. I dont know what i could suggest for that as it did not help me.

I can for sure recomend to keep calm and relaxed even if you are having a level 9 attack. As best you can anyway.

If it is an autoimmune disease you have. Then its your immune system attacking you. And your emotional state effects our immune system.

Thats why upsets and very happy pleasent times make our diseases go into overdrive.

Find ways to relax. And get it off your mind. All this stress.

I say that with clear mind its practically impossible dealing with that pain.

So any time the pain is reduced is a good time to force yourself to relax.

That could shorten each attack. Its worth a try anyway.

Again. I feel for you. So very sorry you are dealing with that symptom.

[Frustrated2 in reply to LLocke]

Thank you LLocke,

I have been on colchicine since July/Aug and doctor reduced the 2/day dose to 1 daily and that’s when all heck happened.

I started declining when the dose was decreased and have doctor added Plaquenil a month ago when I had genital ulcers in March I went back upto 2/Day dose and she added the Plaquenil.

I’m wondering now if doctor will change medications. I have not been on prednisone and all my doctors caution me about going on it as it’s hard to get off and some have had a worse flare when they decrease prednisone dose.

I’m still not firmly diagnosed but doctor is now leaning towards it.

My Gastro dr is trying to fit me in for a colonoscopy asap so we can see it why it’s bad.

Have you ever had to go to hospital for hydration?

It’s hard to drink as that hurts I’m trying to force drink but it painful you can feel it going all the way down.

I’m hesitant to go to ER because I don’t want to deal with no one knowing what this disease is and repeating tests that are not needed.

I could only wish we could flip a switch to stop stress.

That would make it a lot easier. Right??!!

[LLocke in reply to Frustrated2]

Hello Frustrated2.

No i never went to the hospital for hydration.

I only went for appointments for procedures to help find the cause of all the pain.

I remember one test showed my passing through of food was taking more than twice the time for normal.

Makes sense to me. As everything hurt so much my body was obviously slowing it up trying to ease it through instead of the faster way it should have been going.

I am glad it was slower. I dont know how bad it would have been otherwise.

I do remember i threw up a lot during this time.

I also remember forcing myself to drink water. So i did not have the dry heaves. Which i had from time to time.

That is probably why i did not need to be medically hydrated.

I typically sip on water throughout the day even now. I keep a 64 oz bottle right by me.

Eventually they did my first colonoscopy. They found polyps that are the cancerous type and removed them.

There was slight inflamation by one of the areas at the time and some impacted matter in the area. But nothing they thought could be causing all that pain.

If they had not cleared up that impacted area though. They said it would have been days and it would have caused a burst apendex. So thats good they found that.

But that was not what was causing the pain. As the pain continued after the colonoscopy.

I feel it was the on and off intense inflamation that irritated the area that caused the polyps to form in the first place. And caused the slow bowel movements that created the impacted area to begin with.

My 2nd colonoscopy happened after i had been takig the medicine to lessen the Behcets inflamation for a few years. I did not have any more polyps and no sign of cancer types or slow bowel movements or impacted areas or slight inflamation of any area.

Because of these results. I now only have to have a colonoscopy at the normal rate for everyone else.

This does not mean i do not get any intestine attacks. But they are greatly reduced in intensity and duration.

Talk to your doctor about reducing the problem the inflamation in your intestines is causing. Any meds he thinks could be a key for you.

I am very glad i have not had to be on any type of steroids yet. My doctor found what works for me pretty quick compared to ablot of people.

Some of the long term effects of the medicine we all take for autoimmune diseases seem worse than the disease.

So far i have done very well with my medicine.

A good talk with your doctor about what he/she could try for you. Either a change of meds or add to what you are taking could be your solution.

I certainly would prefer medicine that i could take for a long time with no serious destruction of other parts of my body.

Thats why i love what i am on. It works for me and it does not destroy my system. At least so far.

Thats why i worry. A lot of people become sensitive to medicine over time. Or long term this medicine could start to attack my blood bad and the doctor will have to take me off it.

I notice if i miss a dose by just and hour or more. I can actually feel this disease ramping up.

There has been a few times i was out for 5 days or so. And yes each day i was off it the symptoms increased exponentially.

I know this medicine is keeping my symptoms at bay to a livable extent.

By that i mean i can cope.

As one of the odd things this disease is doing is attacking my lungs.

I have been on oxygen at 3-4 liters for over 2 years now.

I asked for the Sulfasalazine to be upped hoping it would improve my oxygen a little more. Because it deffinately does improve my lungs processing of the oxygen. But Dr Zone said i am on the max dose as it is before serious problems are known to happen.

So i try to be satisfied with the results. Afterall the intense intestine pain has been so greatly reduced. I clap for joy for just that relief alone.

I hope you find some relief also.