No solid diagnosis and nothing helps

My boyfriend has had these symptoms for a long time, at least 7 or 8 years. Severe stomach pain, up several times many nights to throw up, diarrhea, blood. He's been to several doctors including a university and has been scoped several times. He says the best they can tell him is that his colon is inflamed and there's ulcers. No realdiganosis, no treatment plan, nothing. He's tried several meds and nothing helps, and probiotics don't help. He currently takes tramadol. He also takes an anti nausea (can't recall the name) that very clearly doesn't help. He does better if he can smoke pot, but he's still far from ok, and currently can't for work reasons. I've seen him get sicker and sicker the past few days and I'm just trying to find anything to help him. A doctor, treatment ideas, some sort of direction. Anything. We're in the Toledo area of that helps.

If he has ulcers and yet the biopsies from his scopes show neither UC or Crohn's I'd look into diet modification because something is causing inflammation and ulcers. Try eliminating wheat and dairy for 2 weeks and see if his symptoms get better.

My gut hates fiber so for me it's no wheat, no nuts, no popcorn, nothing that has insoluble fiber. This is called a low-residue diet (although that diet allows white bread). Less work for his gut to do to process the food. Do not replace wheat foods with gluten-free foods because they may have other ingredients that cause problems.

Eat lots of meat and well cooked low-fiber veggies.

Since the medical people haven't helped you'll have to start being your own detective.
Maybe allergy tests in case he's actually allergic to some food. Celiac test should be done 1st (and that should have been done already unless the docs were incompetent). I am not celiac but was gluten-intolerant which tests do not exist for. I stopped eating wheat/gluten and started healing.

Good luck.

I am trying to get him to lay off milk. He drinks a lot of it and says he's not lactose intolerant. But I wasn't either, until my mid 30s, and now I can't drink it without getting screaming abdominal pain. He's a guy, he's stubborn...

I would request stool samples, and the pathology reports from his scopes. I would also go to an IBD specialist, since he has IBD, and start a relationship with this person where you can get in touch easily when needed. IBD is a condition where he will have periods of remission and periods of flare up. He needs to have a doctor he trusts, and can get in contact with, one who shares accurate and detailed information with him regarding his condition. Stopping milk is fine and may help with symptom reduction, but it's not a treatment for IBD inflammation. The goal is to eliminate inflammation, which in turn will eliminate symptoms, and reduce cancer odds. Untreated longterm inflammation does have potential negative consequences. He should advocate for himself. Why isn't he here looking for info? Does accept limited time with your doctor and don't accept half answers. keep asking, and don't leave until you get the information you need.

Jaspie said...
I am trying to get him to lay off milk. He drinks a lot of it and says he's not lactose intolerant. But I wasn't either, until my mid 30s, and now I can't drink it without getting screaming abdominal pain. He's a guy, he's stubborn...

People with ulcerative colitis or Crohn's might have higher rates of lactose intolerance than the general population. You might convince him to give it up for a week or two and see if there's any change; then have him go back to drinking it and see if he gets to feeling worse again.

But if he tolerates milk ok, then it's a good source of nutrition for him.

Have you gotten a 2nd or even 3rd opinion from a gasteroenteroligist who specializes in IBD? Everything state above makes no sense. Especially being on ibuprofen, which is a NSAID pain-reliever when having IBD intestinal inflammation possibly (only use tylenol). Make sure your current gasteroenteroligist's Doctoral certificate isn't drawn in crayon....

Get colonoscopy and biopsy reports, bring them to another doctor. Post the relevant numbers/info here and we can help translate.

I misunderstand that nothing helps if he's not been on meds.
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What are all the meds he has been on, for how long, and how did they not work?

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Jaspie said...
I don't know, he says he doesn't remember. He's not had any meds other than the painkiller and anti nausea in several years.

That's one way to destroy yourself.

Meds usually help a lot, but most of them take a while to see results ... anywhere from weeks to months. And once you find something that works you stay with it. The right med will be the one that puts you into remission and keeps you there. Remission is the complete absence of symptoms and you live a normal life, but you always continue to use the maintenance medication for as long it works (hopefully for life!)

There are some who find alternatives ... diet and/or supplements ... that work for them. If you browse around here you will find more information about that. What works for one person may not work for another.

There are MANY medications and treatment options available. But you need insurance with a good prescription drug plan. I think all of the biologic medications have co-pay assistance programs where often all you need to pay is $5 a dose. Most insurance plans have requirements for what drugs need to be tried prior to using the biologics.

There's no quick fix, but he definitely does not need to live the way he is now. If no medications work he could get surgery and have his colon removed. There are many people here who have had surgery and are very happy they did. I know it sounds awful, but 99% of those who had the surgery seem to be living a good life now.

This thread is going in circles.....bottom line, let him do he research and decide if he wants to treat his UC or not. Sounds as though he has no desire to know more.

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He's mentioned that the doctor has said having his colon removed is a strong possibility. He's pretty against it at the moment, which is a reasonable reaction for a 34 year old person. But I also don't think he's looked into it very much. I haven't either, really. I just care about him and want him to feel better. Whatever way that comes about is fine by me as long as he feels better and is happy.