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Finally have a diagnosis

I have been meaning to post an update for a while, but I've just haven't had the energy. So, here it is. I wasn't sure if I should start a new thread or add on to my original post with my story.

The GI doc finally said that I do indeed have crohn's. I'm bummed about it because of everything I've read about the disease, but it is NICE to finally have a diagnosis. I guess I caught it pretty early since the typical obvious signs and bloodwork are not present. It is just the chronic inflammation and some ulcers right now. Nothing that screams "CROHN'S!"

I talked to the doc about the side effects I'm having on Pentasa. He said that they shouldn't be from the meds because Pentasa doesn't have side effects, but we'll check it out anyway. I also mentioned my concern about it affecting my pancreas, and I had to tell him that I read about a connection between the two doing my own research online. He agreed to check my pancreas but didn't expect anything to show up because it wasn't giving me a lot of trouble at the time. It's mostly tender and I think is the cause of my upset stomachs and back pains.

So, the plan is to stay on Pentasa for now. Start Budesonide. Then, if that is helping, go off Pentasa for a while to see if the symptoms go away. Then, go back on it to see if the symptoms return. It's a long process, but at least I get to check it out. I had also asked him for nutrition testing because I was concerned I might not be absorbing nutrients from my food. I eat, get an upset stomach, then two hours later I'm starving. Even more so if I have a big BM. He never ordered the tests, so I am going to find a different doctor when I go back in three months for my follow-up. I just don't feel like we click.

Thanks for letting me share. I don't really have anyone to talk to about this stuff except my mother. She researches like I do, so she understands what's going on. Nobody else really gets it. Most don't want to hear about it, period. So, thank you.
 

SarahBear

Moderator
Location
Charleston,
Hi, maggiesimpson!

What symptoms are you feeling that you think might be side effects of Pentasa? Is it something that made you concerned about your pancreas? Pentasa can cause pancreatitis, but it's extremely rare! If you want to look some more into Pentasa, you can check out the 5-ASA/Mesalamine section of the forum, here.

So, your goal is to achieve remission and then stop all medications? Is there a reason why your doctor doesn't want to keep you on Pentasa? How long are you supposed to take it before going off of it?
 

Angrybird

Moderator
Location
Hertfordshire
Thanks for the update hun, I am glad you now have an answer, although I wish it could have been something simpler to fix for you. I think it is best to see about a different doc if you are not getting on with the current one, I have also never heard of a med that doesn't a side effect....

I will be keeping fingers crossed that you can be feeling better soon.

AB
xx
 
Hi Maggie,

I definitely understand how you feel that you have no one to talk to about having this disease. My family try but they just don't understand just how sick this disease can make you. We are always here to lend a ear and a helping hand when ever we can. I love this forum I have been able to get so many answers that even Google could not help with me.

I am glad that you are feeling better and have an answer, next hopefully remission. Hope to hear from you again soon and wishing you the best on your search for a good dr. They are so hard to find.
 
What symptoms are you feeling that you think might be side effects of Pentasa?...
...So, your goal is to achieve remission and then stop all medications? Is there a reason why your doctor doesn't want to keep you on Pentasa? How long are you supposed to take it before going off of it?
Thanks, Sarah.

The pancreas was a surprise finding for me. One night at work I was having horrible pains from behind my stomach that radiated to my back. It was excrutiating, and I almost went to the ER during my lunch break. Unfortunately, I talked myself out of it and was sure I was overreacting. Now I wish I would have gone because maybe I'd have bloodwork to back it up. Since then, I've had frequent upset stomachs and back pain in that same area. I already have chronic back pain, and my latest cortizone epidural and trigger points did not help that specific area - meaning there is another cause than my typical spinal and muscle problems. I would just suspect the stomach, except for the back pain and the timing of the aches. It usually hits about 20 minutes after I eat.

Other side effects that seem a bit alarming to me are fatigue and depression. I have always battled fatigue, but this is a whole new level. I can barely make it through the day, and I am actually terrified something will happen while I drive home from work in the morning. It wasn't until about a couple weeks ago that I realized I was depressed. I was exhausted from all the overtime I was working, and I just finished my fall semester at school which was challenging. Then, I had the appointment with the GI doc who finally said crohn's, and the same week was my b'day. It seemed like more than it should have been, but thought that's why I was down because I only got a couple phone calls from family and my own husband kind of blew it off after a long day at work. At least he acknowledged it. My mother printed off info on my two new drugs and had me highlight all the side effects I was having. That's when I noticed the depression part. Must have missed that before.

I honestly don't know my dr's plan, but mine is to get into remission (even though I didn't think this was a flair because it's so mild) and then get off the meds and focus on nutritional healing. That's IF I can do it without meds. I am not opposed to staying on them if I need to be. I just want to get away from big pharmecuetical if I can. I take too much already. The other reason is that I will be losing my awesome insurance once I make a job change, and who knows when and if the new insurance will cover crohn's meds.
 
AB, no they haven't been checked. I asked for it and got blown off, so I am going to try to get someone else to order testing.

Sarah, I think it only took a week or two for the fatigue to hit really hard and maybe another week before the pancreas stuff began. I'm not sure on the depression part. I've alway had a little dysthymia (sp?), but I didn't realize until a couple weeks ago that I was really down.
 
Maggie, I have had to use my GP in conjunction with my GI doc to take care of my nutrition and manageable side effects. My GP monitors bloodwork for my absorbsion of nutrients, works with my anxiety and depression and the migranes. My GI seems only interested in treating the CD and not the person as a whole.

Auntie Em
 
Location
USA
I agree with AuntieEm. My GI only cares about treating CD and anything else gets pushed to my GP. But I have a great GP who takes care of anything I need, wish I could say the same about my GI.

Also I was put on pantasa when I was first dx. I didn't have your side effects but I was losing my hair. So I decided I didn't need meds ( I was having a hard time believing I had crohn's). I was fine for a few months but then it seemed like I was always having stomach issues. I'm now having tests done to see how much demage I've done. Be careful going without meds you don't want to cause more damage.
 
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