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My Crohn's Story

I have experienced GI symptoms over the past thirteen years. In 2003, at the age of 22, I started having my first symptoms. I was finally referred to a GI doctor in 2006 after symptoms worsened. The GI doctor ordered blood work, a CT scan, and an Upper and Lower Endoscopy. The results from the testing came back "suggestive of Crohns". The CT scan showed inflammation and scarring in the terminal ileum, and there was some inflammation noted in the small intestine. The GI doctor began treating me for Crohn's Disease. I was put on Pentasa 500 mg four times daily and Prednisone. After about a month of treatment I had noticed a huge improvement. When I went back for my follow up appointment, the GI doctor took me off of all my medications and told me that he "didn't believe that it was really Crohn's Disease, and gave me a diagnosis of IBS." I was upset by this because I was crushed to have been told that I had Crohn's Disease, and now I was being told it was a mistake and just to "just take some Immodium and change my diet". So, I went on with my life and accepted the fact that I had IBS and it was something that I would have to just deal with.

In 2009 I developed severe upper right abdominal pain, and on CT scan it was shown that I had gallstones. My gallbladder was removed that next day. My symptoms started improving after my gallbladder was removed, so I thought that maybe it had been a cause of the GI symptoms I had been experiencing. I was wrong, the symptoms returned after a month.

I finally made the decision three weeks ago to see a different GI doctor for a second opinion. After experiencing severe pain in my lower right abdomen, weight loss, nausea, fatigue and continual loose stools and missing work, I knew it was time to do something. My GI doctor was amazing, and after obtaining my past GI records, repeating blood work, doing another CT scan and another upper and lower endoscopy...the diagnosis of Crohn's Disease was finally made. This time the colonoscopy showed ulcerations in my small intestine along with inflammation. I was started on Pentasa 2000 mg daily, and it was increased to 4000 mg daily last week due to continual pain in my abdomen and nausea. The past few weeks have been miserable. I have been constantly nauseous, and without any appetite. I weighed 150 lbs in January, and I am down to 130 lbs today. I have adjusted my diet, and when I do eat it is usually bland foods like bananas and toast. I'm a vegan, and I have no idea what to eat at the moment. I saw my GI doctor today due to my weight loss and lack of appetite, and pain in my lower right abdomen. I was started on Budesonide 9 mg daily for the next two months to reduce the inflammation. I am really hoping that it helps.

I have just been feeling a little depressed over the whole thing, I don't think I have fully accepted it yet. And I don't feel like friend's and family understand, even though they are trying really hard to understand what I am going through. But I am hopeful that this medication will work and that I can get back to feeling like myself again.

I'd love any advice regarding what to do when you are newly diagnosed, any tips or suggestions? Especially concerning diet during a flare up, are there any other Vegan's out there?
 
Hi and welcome! Sorry you had to go through being diagnosed and then undiagnosed before being diagnosed again.

I have read that the Pentasa (mesalamine) is often not very helpful in Crohn's and that it can sometimes cause gi symptoms. My son was put on Asacol (mesalamine) and it did nothing for him; his doctor said it helps in a third of patients but that it was a worth a try because it's safe (and we were trying to avoid immunosuppressants). My son has done well on budesonide but he started it after a course of prednisone; 9 mg budesonide has kept him doing reasonably well for the last 9 months, but he is also on vitamins, and low dose naltrexone so it's hard to know what's doing what.

Blended food, smoothies and fresh juices seems to be better tolerated than solid food. Nutritional drinks are (Ensure, Boost etc) are often helpful at supplementing calories and are some times used instead of food, "enteral nutrition",and can help create a remission. Drinking supplemental Boost really helped my son (age 19) stabilize and then finally gain weight. I'm not sure if there are any vegan nutritional drinks that would be suitable. Getting enough protein and avoiding sweets seems to be recommended (though you will find varied recommendations...)

It's important to check your levels of iron, b12, vitD, zinc, folate and maybe more so, if you're vegan. Many people seem to find VitD3 supplements to be helpful. Hopefully there will be some vegans along who can share their experience with you.

Best wishes and hope you are feeling better soon.
 
Thank you for your reply.

I feel like since starting the Pentasa I have had less of an appetite and more nausea, but I am hoping that it will subside. I just took my first dose of Budesonide tonight. I am hoping that between the two I will get some relief. I have a follow up with my doctor in a month, and he seems to really be on top of things.

I've been trying to drinking Ensure at least 1-2 x a day if I can't get anything sufficient into me. I'm not sure if there are any Vegan options for supplements. I started taking a multivitamin as well, and I stopped drinking diet soda.

Best wishes to your son, and thank you so much for your input!
 

Jim (POPS)

Jim (Pops)
Location
Antioch, Ca
Hi and welcome to the forum. I'm sure you will find the support you need here. I find the chat room is a good place to vent and ask question.

I hope you feel better soon.

Jim
(Pops)
 
I'm not vegan but white potatoes were a life saver for me when I first went back to solids. They were super easy to prepare when I was feeling weak. I just microwaved them, then peeled off the skin before mashing them up with bit of olive oil for added fat. Finding foods you tolerate can be a process but you'll get there.
 
I heard that sweet potatoes and potatoes were good. Right now I am just sticking with rice, bananas, broth, plain pasta, and toast. I've been trying to stick with low fiber/low residue. I don't have the appetite at the moment to eat anything too heavy, but I am hoping now that I have started on the steroids, that my appetite will start to improve.
 
Welcome Buddha,

You have come to a great place as a resource and a place to vent.

I had symptoms throughout my life but was not diagnosed until I was 42.

I guess (for me) the diagnosis was a shock. I had never heard of the disease let alone know what to expect. I think the first thing is to accept your condition and know that it can be managed. Try to maintain a positive attitude and understand that there will be bad days but there will also be good days.

Personally I have never found diet to be a big factor with my Crohn's. I did however find eating small amounts more often was better than eating a larger meal.

Having the "right" doctor is paramount in your treatment. Make sure he/she is fully familiar with CD and has a track record.

So, after all these years I now look at my Crohn's as an inconvienence.

All the best.
 
After being on Pentasa now since April, and briefly on Budesonide and Prednisone, my GI doctor is now trying to get me started on Humira.

The Pentasa is not helping my symptoms, and after stopping the Prednisone I went right back into a bad flare. My entire body aches, especially my joints. My hands, wrist's and my hips are the worst. I also started losing more weight again because I'm not holding much in. I went to my GI doctor and told him about my symptoms and questioned Humira or Remicade. I have to admit, I am a little terrified by the possible side effects, but he assured me that I am young and should have no problems tolerating Humira. My main concern is that I am a nurse and constantly around people that are sick. I am nervous about infections. Is there anyone else on Humira that also works in healthcare? Should I be concerned about this, or do the benefits outweigh the risks?

I'm currently waiting to get insurance approval, so I should know something by next week. I'm just so tired of being in pain, I feel like every joint/muscle in my body is inflamed.
 
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