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thankful
@thankful

Posts: 154
Joined: Apr 27, 2016

Crohn's disease

Posted by @thankful, Jun 21, 2016

My wife suffers from Crohn’s disease and she was placed on Remacaid years ago. It really helped her and she had to have surgery for a Fistula early on that was a result of the Crohn’s. After being on Remacaid for a few years her symptoms were nearly gone and her Gastrologist asked her to take a blood test that he said was the “gold standard” to determine whether she still had or ever had Crohn’s. It came back negative and over the next several months he weened her off the Remacaid. Within the next few months the symptoms returned and after having another Colonoscopy, he apologized and put her back on Remacaid. This doctor shortly retired and her new doctor continued the Remacaid. She is back to where she was before, but she has those symptoms now that her mornings are usually a tough time for her with several running trips to the bathroom. Sometimes unsuccessful.
Does anyone have any suggestions as to how to proceed? Thank You!

REPLY

Hi @thankful,
I moved your message to the Digestive Health group to connect you with other members who have experience with Crohn’s — either themselves or a family member. @bonitav @mswanda @kaycigirl @judylindholm @gillyk14 please meet @thankful, who has some questions about managing Crohn’s disease.

@thankful – I’m glad that you’ve found another doctor. How long has your wife been on Remacaid since she returned to taking it. Is her gastroenterologist confident that the Remacaid can get her back to being almost without symptoms as she was before?

@colleenyoung

Hi @thankful,
I moved your message to the Digestive Health group to connect you with other members who have experience with Crohn’s — either themselves or a family member. @bonitav @mswanda @kaycigirl @judylindholm @gillyk14 please meet @thankful, who has some questions about managing Crohn’s disease.

@thankful – I’m glad that you’ve found another doctor. How long has your wife been on Remacaid since she returned to taking it. Is her gastroenterologist confident that the Remacaid can get her back to being almost without symptoms as she was before?

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Hi Coleen, She has been on Remacaid for 2 1/2 yrs. since then. This Dr. had also had her on a lower dose and also on a drug called Uceris. She was having some strong side effects from that drug where she often had confusional episodes especially in the evening like she had been drinking and she had not? She was taken off this drug and the Remacaid dose was increased and as I said other than some morning issues she has been back to doing well. I have some concerns from the long term effects of Remacaid, but it is providing the help that my wife desperately needed and I guess that’s what really matters. Any feedback would be greatly appreciated.

My daughter takes Humira for Crohn’s. Is that a possibility?

@spiderwebb

My daughter takes Humira for Crohn’s. Is that a possibility?

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@spiderwebb– Humira is a newer infusion drug I believe that can be used to treat Crohn’s disease. Remacaid has been around for probably 12-15 years and my wife knows several that have used this drug for quite a long time with good results. I hope that helps!

Getting a second opinion may be an option to consider. It could help with confirming the diagnosis after the switch of the doctors and could help with getting informed of other treatment options available for your wife. This can help you decide which options might be best for her and make you feel more confident about the plan going forward.

Liked by thankful

I have Crohns disease and have alot of stomach pain. It feels like constant hunger pains. Anyone with similar pain? I take Imuron and it helps some, but I have to eat every couple of hrs to really keep the pain down.

Welcome to Connect @chicoco.
I moved your message to this existing discussion about Crohn’s disease so you can meet @spiderwebb @thankful and others. @bonitav @guener @jay_baruch I’d like to also bring you into this discussion. New member @chicoco has some questions about Crohn’s related pain that feels like a constant hunger pain. Have you had a similar experience?

We look forward to getting to know more about you Chicoco. How long have you had Crohn’s? What type of food helps keep the pain at bay best?

@chicoco

I have Crohns disease and have alot of stomach pain. It feels like constant hunger pains. Anyone with similar pain? I take Imuron and it helps some, but I have to eat every couple of hrs to really keep the pain down.

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chicoco- My wife has been on Immuran 2x and she ended up with Mono one of those times. She has been on Remacaid for many years now and has virtually been symptom free. It is a very expensive drug and we are fortunate to have good health insurance.
We get to our deductible pretty quick as she gets an infusion of this drug every 8 weeks. I would highly recommend getting a 2nd opinion on Immuran and ask if taking the Remacaid is at all an option.

@chicoco

I have Crohns disease and have alot of stomach pain. It feels like constant hunger pains. Anyone with similar pain? I take Imuron and it helps some, but I have to eat every couple of hrs to really keep the pain down.

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@chicoco, my only experience with anything like hunger pains in my Crohn’s experience has been a result of taking prednisone at the time. Did these pains always exist, or did they start after starting on the Imuran? I’d talk to your GI doctor about it to rule out the latter and/or any other complications.

@colleenyoung

Hi @thankful,
I moved your message to the Digestive Health group to connect you with other members who have experience with Crohn’s — either themselves or a family member. @bonitav @mswanda @kaycigirl @judylindholm @gillyk14 please meet @thankful, who has some questions about managing Crohn’s disease.

@thankful – I’m glad that you’ve found another doctor. How long has your wife been on Remacaid since she returned to taking it. Is her gastroenterologist confident that the Remacaid can get her back to being almost without symptoms as she was before?

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@thankful, I’m not sure why some doctors think it’s necessary to change treatment plans/medications that work unless there is a really good reason to do so (like new evidence of risks related to a specific drug, etc.). As long as the Remicade is working fairly well, and your wife is happy with the results, it seems like a reasonable idea to stay the course. As informed patient/couple, you can stay abreast of the medical information on long-term use of Remicade and other drugs/treatments. Some people stop responding to a biologic like Remicade after a period of time and *then* switch to another (like Humira, for example); while, everything I’ve read suggests that it’s not generally recommended to start/stop a biologic drug without good reason, as that may impact drug efficacy in the future. Hoping your wife continues to respond well to treatments.

Liked by thankful, kayelle

@chicoco

I have Crohns disease and have alot of stomach pain. It feels like constant hunger pains. Anyone with similar pain? I take Imuron and it helps some, but I have to eat every couple of hrs to really keep the pain down.

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thanks for the info. I am going to talk to my doc. but have u ever had the pain that feels like hunger pains

@chicoco

I have Crohns disease and have alot of stomach pain. It feels like constant hunger pains. Anyone with similar pain? I take Imuron and it helps some, but I have to eat every couple of hrs to really keep the pain down.

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thanks. I do take prednisone for short courses because I also have pulmonary fibrosis. but these pains have always existed

@chicoco

I have Crohns disease and have alot of stomach pain. It feels like constant hunger pains. Anyone with similar pain? I take Imuron and it helps some, but I have to eat every couple of hrs to really keep the pain down.

Jump to this post

I’ve never had belly pain like hunger that was disease related.

@chicoco

I have Crohns disease and have alot of stomach pain. It feels like constant hunger pains. Anyone with similar pain? I take Imuron and it helps some, but I have to eat every couple of hrs to really keep the pain down.

Jump to this post

I asked my wife about your question about hunger pains and she has not had any symptom that felt like that. She also has been on Prednisone for short stents and at first she liked the extra energy boost she felt, but then she did not like it after a bit nor the puffiness she was experiencing. I would agree with jay_baruch about talking with your GI doctor about the pains. In my opinion, this should not be something to accept but rather should cause you to seek out a solution.

I have Crohn’s also. My experience have been I put Crohn’s in remission since a year now. Without drugs and based the treatment on a doctor in Italy who saved me from loosing part of my intestines to severe abdominal pain in 1960. The prescription was shots of: Methionine, vitamin B-12, vitamin K. A two week treatment and I was brand new for 3 years. All he did cleaned the liver and removed my pain, GERD, allergies towards food, bloating and belly fat, and gained excellent memory also my eyes were sharp. I can’t explain this experience to any doctor in USA. I discovered Methionine to be a nutrient and not drugs. Also I read in the internet that can cause hardening of the veins. I located Liver Support Factors pills that had Methionine, choline, milk thistle, and many other ingredients. I tried it and my system responded in the next couple of days by calming my stomach and allow me to swallow since I found out later that I had ulcers on my esophagus. I showed the pills to a doctor who performed one week of testing and was able to see my Crohn’s activity and ulcerative colitis, but she refused to even read the ingredients. I don’t blame her since there is not enough testing done to confirm the effects. My actual cure was better than the pills and very simple. I discovered the liver loves vegetables specially raw. I can’t eat raw all the time from fear of bacteria. A neck pain made me realize bread and sugar increased the pain and vegetables decreased the pain. I started last year since I was almost type 2 diabetic. It will shock you what I found out, but the Internet is full of this information and no one wants to listen. Removing sugar, bread, All carbohydrates, processed foods, and any food with preservative made me gain my entire health back. I learned the liver loves vegetables but don’t do well with sugars. All breads, flour products, and carbohydrates converts into sugar. I even noticed too much fresh fruit sugars impacting me as well. By changing my diet to vegetables, salads, fresh fruits, and protein (fish, chicken, or meat) I achieved the following health benefits: I put Crohn’s in remission, I reversed diabetes completely, I lost my belly fat and bloating, I healed my ulcers, lowered blood pressure to normal, my memory started to work like never before, GERD was gone, and stopped all inflammation pain on my neck and lower back. But as soon as I eat any flower products or sugars all my discomforts are back. Now I know how to work with my liver. I hope this information will help and guide her out of suffering. I do not take liver supplements when I am true to my simple diet. Water and some herbal tea is my drink. I do make smoothies with fruit and raw vegetables and stops my inflammation pain within one hour from eating the wrong things.

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