Alotta problems

By arrell

2 min read

Hi I've had intestinal issues for over 10 years and am at my witts end. My story is complicated by other serious health issues, including HepC, a liver transplant and a subsequent stroke, which paralyzed me on my left side (I have regained SOME function but still cannot walk).

My symptoms mimic UC or IBD (your choice). Inflammation and ulceration of intestines. Feelings of fullness and having to go right after going. Sickness, pain and pressure. I can only eat small amounts.
Over the past 10 years I've seen numerous doctors and been hospitalized several times JUST for this issue, but all have frustrated me badly. All they do is "Slow-Walk" me through the same Hospital/Lab tests....colonoscopies, endoscopies, Lab work. After MONTHS of inconvenience, when they fail to find any Cancer or polyps, they dismiss me..."you're fine...you're fine"...this is intolerable. I have repeated this process many times in the last decade, and I refuse to subject myself to it anymore.

I suffer pain, pressure and sickness every day.

When I need to Go, the need is SO URGENT I can barely make it... and if I'm outside or away from home, I WON'T make it. My last colonoscopy showed 10 ulcerations in my colon (18 months ago). As usual, NO follow-up and the usual: "You're fine..you're fine...They're only little ones".

I have gone through every doctor I'm inclined to see in my city, and now I "Get It": They're all afraid to touch me, or do anything for me...they are afraid of Liability if anything happens as a result of anything they might do. When I give them all the details of my misery, they all look at me like I'm crazy (even though I express myself well and endeavor to keep it short). So, I have an appointment with my Transplant doctor in a distant city. She is the ONLY ONE I trust anymore. And although she's in Hepatology/Liver Transplant, I'm counting on her to help.

WHAT I WANT: is TREATMENT.

Can someone share with me please, their idea of an effective way to present my request? Can anyone share please, WHICH drug helped them? IS there anything which will help me with the Inflammation and the Ulcerations which bedevil me?

[P.S.: I suspect my problem is being caused by my immune system...Familial tendency toward that.]

Stelara? Humira? Anything? Pill form, vs. Infusion?

Any help anyone could give me would be greatly appreciated....RL

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thedancingcrohnie Moderator & Contributor
Hi <inline-mention user-id="2255047" username="arrell"/> , I am so sorry to hear that you are going through all of this. I know how it feels like to be frustrated when it seems like no one can help your case. Have you been formally diagnosed with IBD? It's interesting that you have ulcerations in your colon and weren't diagnosed with UC. But of course, I am not a doctor and there must be a reason why. Have you had your CRP levels tested? It is a blood test and is a good inflammation marker. I wonder if yours are elevated. As far as treatment, if you were diagnosed with UC I have heard great things about a pill called Xeljanz. There are also many biologics available like Humira and Remicade. Of course, everyone reacts very differently to medication so unfortunately its a game of trial and error. You just have to try it out and see if your body responds. I highly recommend looking into your diet. If you have ulcerations in your colon you definitely want to stay away from foods that would aggravate it. High fibrous foods are probably not a good idea at the moment until you heal. Bone broth and chicken broth are incredibly healing to the gut and provide nutrients for the body. Have you had your vitamin levels tested? Typically most with IBD are Vitamin D deficient and are on supplementation for that. I also personally take probiotics daily as healthy gut flora is always a good idea in our case. I can go on and on but I am not a doctor and it is important to speak to one as every case is different. If you suspect you have IBD I would push for more testing in order to completely rule it out. Here is an article that goes over diagnostic testing. I would go over it with your doctor and push to have these tests done: <a href='https://inflammatoryboweldisease.net/diagnostic-tests-and-procedures' target='_blank'>https://inflammatoryboweldisease.net/diagnostic-tests-and-procedures/</a> I hope this helps some. Please reach out if you have any questions. Rooting for you. Warmly, Elizabeth (team member)
1. arrell Member
 The doctor I'm seeing next month is in a distant city. The Local doctors...I do not trust them and refuse to see them anymore. I already know what to expect, from them. I've lost a lot of respect for the profession (doctors) because of all of this. And I don't mind telling them, either. I've learned: DO NOT be Meek. Be your own Advocate. Raise the roof, if you have to. Get another doctor...the phone books are full of them. This (advice, to myself) literally saved my life, 6 years ago. (different issue). And I will never forget that Lesson.
2. thedancingcrohnie Moderator & Contributor
 <inline-mention user-id="2255047" username="arrell"/> , I hope you get answers soon. We are rooting for you and believing that you will improve soon. Don't lose hope! Sending strength your way, Elizabeth (team member)
Matt Nagin Moderator
I'm really sorry about what you've gone through. This sounds terrible. I have had experiences with doctors not taking me seriously and do get how humilating and challenging that can be. Once I saw my doctor's file. It said I suffered from idiopathy. I didn't know what it meant. But I thought he was calling me an idiot. Or that I was just making it all up since I was an idiot. Turns out it means the cause of my symptoms was unknown (they suspected a lot of it was from intestinal adhesions from prior surgeries but were not sure). I mention it only because it is hard sometimes to know what these doctors are thinking. That said, they definitely should be more empathetic and take you more seriously and offer you more options in the way of treatment. As per what medicine to take, that is a very tricky question. There are so many medicines that work for IBD, but it really depends on whether you have Crohn's or Colitis as well as where the inflammation is located. Some of the medicines include 5-ASA meds (like asacol), steroids (like predinsone and entocort), biologics (like Humira and Remicaid and Cimzia), and immuno-suppressants (like 6MP). There are also antibiotics being used like Cipro and Metronidazole. I have had some success following MAP theories of Crohn's disease. There are FB groups if interested in that area. In terms of alternative remedies, I believe in blue chamomile as an essential oil applied around the belly button to help alleviate symptoms, a moxie stick at certain pressure points (or acupuncture), and DMSO applied topically to abdomen. I also think there is some convicing evidence for LDN (low-dose naltrexone). The last bunch of these treatments are more alternative so take them with a grain of salt and only take them in consultation with your health care professional (I am not liable for any drug tried that does not work). These are things that I've had success with....as well as Cimzia (a biologic). Redhill Bio is working on antibiotic treatment based on MAP theories and there are other burgeoning treatments so try to hang in there as the knowledge about how to treat these conditions keeps growing. Again, all that being said, I'm sorry about what you're going through.