I'm new and need some advice on troubling symptoms please?

[PKA]

Hello, I’m new here and looking for some advice. I was recently diagnosed with Crohn’s disease about two months ago. My symptoms were diarrhea, abdominal pain, nausea, rectal bleeding, pus, weight loss, fatigue, anemia, and pain when I went to the bathroom.

The doctor put me on Pentasa (two 500mg pills four times a day.) It got rid of the diarrhea and reduced my nausea, but did nothing for any of my other symptoms. In fact I bled even more, a couple times even when I wasn’t going to the bathroom. The pain also got worse. I thought I had an anal fissure so I went back to the doctor. He did a rectal exam and said he saw no fissure but that my rectum was very inflamed, swollen, and full of pus (so inflamed he did not fully complete the exam because he said it would be too painful.) He prescribed prednisone and Canasa suppositories.

Ever since I started taking these new meds, I have been experiencing new symptoms. I am lightheaded and dizzy all the time, to the point that I feel like I will faint if I don’t sit or lay down (I haven’t actually fainted, just felt like it.) I’m so weak all the time. More troubling is that I get a racing heartbeat. It feels like I have run a mile even if I’m just sitting and watching TV. This usually happens right after I eat, and the bigger the meal the worse it is. I also am constantly thirsty and sweating more.

The lightheadedness/ dizziness and fast heartbeat are not listed as side effects for my medications, but they started about the same time I started taking them. I assumed at first they were side effects of the medications, but now I am worried that it could be something related to the disease itself. I don't know if I should stop taking them or not. The bleeding has been reduced since I started them, and it’s helped with the pain somewhat, but it’s really bothering me.

I’m just looking for any advice. I’m so tired of medications and calling my doctor and having to go to visits all the time. I have no one else to talk to about this and I’d really appreciate any insight.

 

[David]

Hi PKA and welcome to the forum, I'm really glad you joined though I'm so sorry to hear of your troubles Some questions first if you will:

1. Did you have a colonoscopy? If so, where is your Crohn's Disease active?
2. Did they do any tests to evaluate if there is disease in your small intestine?
3. Have you been tested for vitamin B12, folate, and vitamin D deficiency? If so, what were the results?
4. How are they treating your anemia?
5. What dose of steroids are you on?

With those questions out of the way:

A. Based upon your symptoms, there's a decent chance the Pentasa wouldn't control all your symptoms. Now, it DOES work for some, but it's usually people with more mild disease. It's pretty much the bottom of the pyramid when it comes to treatment strength. Trivia answer: Pentasa isn't actually approved for the treatment of Crohn's Disease. I'm not saying Pentasa isn't something you should be taking, but I would be surprised if it induced remission for you.

B. The prednisone should knock things down pretty quick. Some of the symptoms you're experiencing could be due to it. However, those symptoms you describe also correlate with anemia, vitamin/mineral deficiencies, dehydration, and more.

C. You shouldn't be feeling this way. I know you're tired of calling your doctor but the biggest trick to Crohn's Disease is finding the treatment regimen that is right for you. Until that happens, these are unfortunately some hoops that need to be jumped through

D. I'd suggest researching enteral nutrition. It could help calm things down for you real fast.

We're here for you bud. If you can answer those questions, we can provide some additional insight.

 

[PKA]

Thank you for replying, David

Answers to your questions:

1: Yes, I had a colonoscopy and also an endoscopy. They said it was most active in my terminal ileum and rectum.
2: Just the endoscopy.
3: I was tested for B12 and folate. I wasn't deficient. I don't think I've been tested for vitamin D but I do take a supplement for it (it's together with my calcium supplement.)
4: They told me to take iron pills. I've been on them for about two or three months.
5: The dosage is a little confusing. For the first week I take 4 10mg tablets, then the next week I take 3 and a half, then 3 the next, etc etc reducing by half a pill for six weeks.

That's very disappointing to hear about the Pentasa. It's so ridiculously expensive ($131 for a one month supply!) I was really hoping it'd work Is the same true for the Canasa? I know they are the same ingredient.

I was afraid the symptoms may be due to some deficiency. Not knowing is really worrying me. I suppose the only way to really know is to be tested?

Regarding enteral nutrition ... I don't eat dairy. Is it still possible for me to do it?

Thank you again for your response. It's nice to have someone to talk to about this.

 

[David]

What was your specific vitamin B12 level, do you know?

When was the last time you had normal blood work done to check your various levels?

Your prednisone dosage is pretty common. They taper you down because the body needs to adjust over time and start to make its own cortisol again. Quitting cold turkey will cause big problems.

The pentasa may work great for you. And even some benefit is nice. I've provided some data on Mesalamine (the active ingredient in Pentasa and Canasa) in this thread. I suggest you give it a read. In the end, it comes down to whether it is helping you or not. If it is, great. If not, talk to your doctor.

Yes, the best way to find out whether you are deficient is to be tested. As Crohn's Disease patients often suffer from malabsorption and nutritional deficiencies, I feel it's important to stay on top of.

There are indeed dairy free enteral nutrition formulations.

There's someone here 24/7. You always have someone to talk to

 

[PKA]

My B12 level was actually quite high because I've been taking a supplement for it long before I even got sick (I'm a vegetarian.) It was 1627.

I last had my bloodwork done May 3, but they didn't share the results with me. I had gotten it checked twice before that a month or so earlier with my family doctor, when I first got sick while they were figuring out what was wrong with me. That's when they said I was anemic. After they sent me to a gastroenterologist, he told me I needed to have bloodwork done once every three months. May 3rd was the first I had it done so I go back in the beginning of August. I suppose everything was normal if they didn't call me?

The link about the mesalamine was interesting ... though a bit disappointing. It didn't say anything about taking it rectally. I wonder if it makes a difference?

I'll look into the enteral nutrition. Hopefully it doesn't come to that but I'm open to anything that can help.

Thank you

 

[Jennifer]

Doctors rarely call about blood work unfortunately. Even I have to make a separate appointment just to hear what my blood work said. :/ Also they don't check for everything when they do blood work each time. You have to ask for specific things to be checked in addition to what the doctor wants to check. So ask your GI or GP to check your iron etc all over again to be sure. Gotta make sure the supplements are working.

As for the Prednisone, it always makes me dizzy, lightheaded and messes with my hearts rhythm. Its probably the one medication out there with the most side effects yet gets the job done pretty quick. My heart doctor doesn't like me taking it though (I've got some heart issues) so I take Entocort well before I try Prednisone. All of the new symptoms you mentioned are listed under Prednisones side effects: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000091/

 

[2thFairy]

Canasa suppositories help disease by working on the surface only, like putting ointment on a scrape. When I had an unending ulcerative colitis flare, Canasa suppositories helped cut the bleeding down and helped some with pain.

 

[PKA]

Oh, I didn't know those symptoms were listed as side effects. I only read the paper that came with the prednisone and they weren't on there. Are the symptoms dangerous? Like dangerous enough that I should stop taking the prednisone? Or do I just gotta deal?

 

[Jennifer]

I'd contact your doctor about that. Likely they will say, "yes Prednisone can do that," but if it really bothers you or affects your life in any way then you should push saying that your symptoms are too much or maybe they may shorten the course. Either way, best to mention it.