Crohn's Disease Forum » Your Story » Crohns? Should I start this med?

10-20-2017, 01:35 PM   #1
Join Date: Oct 2017
Location: Newark, Delaware
Crohns? Should I start this med?

Hi Everyone
I am 49 yo who has had constipation issues for most of my life. I have gotten used to it and taken steps to keep me regular. I went for an EGD for reflux and a coloscopy at the same time. Doc told me that I had some inflammation in my ileum. He did a biopsy and sent me for blood work. All my bloodwork came back normal. When at my follow up visit he told me he thinks I had crohns and needed to decide what medication to start (either a short term steriod or biologic)

At the time I told him I didn't want meds but rather wanted to wait and watch. (As I really felt I did not have symptoms consistent with his diagnosis). However my research indicates constipation with crohns is possible. Further I do get pain once in a while that I thought was related to inguinal hernias on both sides (had 2 surgeries) with the most pain on the lower right side. This pain comes and goes I will feel it for 2-5 days and then not again for a month or two.

Right now I feel no pain for the past week and I did a fecal calprotectin test the other day.

After leaving the docs office I thought maybe I may have been confusing my hernia pain and it could really be related to crohns and told the doc I would try the med ( Entocort)

Do you think I should have more tests before I start the meds to be sure ? He told me terminal ileitus. I didn't ask about the biopsy.
I thought I would start the med to keep the inflammation down but now I am nervous.

Should I get a second opinion before I start the meds? Any questions tips or similar experiences.
Thanks in advance!
10-20-2017, 04:25 PM   #2
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You could ask the doctor about doing a MRI.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-20-2017, 10:25 PM   #3
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If you can get a second opinion, do so. I wish you luck.
10-20-2017, 10:31 PM   #4
my little penguin
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You can get a second option
You can have Crohns with active inflammation inside with no symptoms on the outside .
Ds was also dx with Crohns but has constipation as a main sign
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10-23-2017, 06:06 AM   #5
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Hello, welcome to the forum

I'm sorry you are having problems but I'm glad you've found us.

Crohn's disease can be a tricky condition to pin down, this is largely because there are so many possible symptoms and presentations and no two people with the condition are the same. It is entirely possible for constipation to be a symptom of IBD, in fact it seems to be more common than doctors initially thought. Personally, I shift between spending most of my day in the bathroom and not being able to go at all.

I would ask about the results of your biopsy, in my experience doctors wouldn't mention biologic therapy without good reason, so for them to ask you to consider starting them I would think they are relatively sure you have Crohn's.

You can also ask them to perform some imaging like an MRI, which will allow them to see the rest of your bowel that can't be seen in a scope, or you could request a capsule endoscopy where you swallow a small camera in the shape of a pill, and this gives the doctors a detailed look at your small bowel, but they need to be sure you don't have any narrowing of the bowel where the pill can get stuck before going ahead with this test.

The calprotectin test should also help to determine if you have active inflammation in your gut, if it proves there is inflammation then this would rule out irritable bowel syndrome and make an IBD far more likely.

In terms of not having very many symptoms, this is pretty common too, many people experience very mild or random symptoms and don't realise there's much going on at all. Unfortunately, this doesn't always mean that the condition hasn't progressed and therefore it's really important that you and your doctors keep an eye on things and get a good view of whats happening internally. I personally battled for 5 years to get an answer for what was happening as doctors fobbed me off because my symptoms weren't "severe enough", by the time they actually diagnosed me my only option was surgery as the damage was too severe for medication to fix.

You are always entitled to a second opinion if you are uncomfortable with what you're being told or if you feel like you need more information about your condition and available treatments, but I would recommend asking your current doctor to fully explain your test results before contacting a new doctor so that you have the information needed to make an informed choice.

coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns:

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin

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