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Newly diagnosed, post surgeries, Need medicine advice

I am so pleased to find this forum and appreciate any advice you can give!

I am a 53 years old woman who had always been physically active and healthy. In March of last year I had my first colonoscopy which indicated mild crohns and was put on Lialda (made me bitchy) and then Apriso (made me tired) but I began to feel worse. I was increasingly tired, felt like I had an appendicitis, my gums were swollen and bleeding. I blamed the colonoscopy and the medicine and switched to a crohn’s specialist. He sent me to the city to get a scan with contrast. I knew I was in trouble when he called me within an hour after the test and asked me how I was feeling. My appendix was looking scary among other things. He wanted to see me the next day.

After visiting a surgeon, it was apparent that I needed at a minimum an appendectomy and an ileal resection as I also had a cecal mass. He didn’t really know how much he would take out until he got in there and was worried there may be cancer (thankfully not the case). I had the surgery last July and because he was concerned by what he saw, he went ahead and did a right hemicolectomy, but thankfully the biopsies came out normal. They called it crohn’s of the appendix and I had the largest appendix the surgeon had ever seen. Strangely proud of that. He told me I must have a high pain threshold.

In August, I was back in the hospital with an abscess (surgical post infection) and that infection and its recovery was way worse than the surgery. I was put on metronidazole as that was all they thought I could handle at that point due do to my recent infection. This past February I had incisional hernia repair due to damage from the July surgery. So, after really never having any health issues, I have had 3 hospital stays in 7 months each requiring significant recoveries and feel like I have aged 5 years.

Three months ago (the day before the incisional hernia surgery-fun times!) I had a follow up colonoscopy and the crohn’s had recurred. It’s mild but it’s there. Specifically, the colonoscopy showed 4 scattered ulcerations of the ileum, mild inflammation, and 2 diverticuli in the colon. It seems like the issues surfaced in the area of the resection.

Now they want to put me on medicine and frankly I am overwhelmed. I feel like I haven’t had a chance to feel well in over a year and I just want to put my head in the sand and not think about it. That doesn’t seem very mature but the side effects of the meds scare me.

However, my surgeon said given the large mesh they had to put in for my incisional repair, further surgeries were going to be increasingly complicated and I should avoid them at all cost.

Because I had that post op infection, my crohns doctor is hesitant to put me on the biologic at this point, and wants to put me on an immunomodulator (6-MP?), redo the colonoscopy in 3-4 months. If things aren’t better he wants to put me on a biologic which sounds terrifying.

As a side note, both of my children, my sister, father and nephew have celiac and my home is gluten free. So even though I don’t have celiac, I eat mostly gluten free.
 
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scottsma

Well-known member
Location
Tynemouth,
Hello and welcome to the forum,but I'm sorry you have to be here at all,of course.
You've really had a bad time eh.? Your doctors seem to be doing the best for you from what I read in your post.My crohns is pretty manageable luckily,so I'm not really in a position to advise you on meds.etc.,but there are plenty good folks on here who have been in your position at some time,and I know they'll be along soon to offer support.I hope you can start to feel better soon.
 
Welcome. I am sorry for all you have been through. I think you should do as the doctor has said. Hopefully,the immunomodulator will work and they wont need the biologic. Keep us posted on how you are.
 
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