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How Bad is it, really.....?

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Crohn's Disease
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Posted 5/4/2014 11:57 PM (GMT 0)
Hey all,

Here's what's going on. I have 25cm of inflammation with a 4cm stricture. I have a micro perforated bowel they discovered the other day during a routine ultrasound with a surrounding abscess.

They sent me home with two prescriptions for antibiotics and basically told me they 'think' the perforation will heal itself. Is this realistic?

Also I will be starting Humira basically as soon as I am healed enough - what are my chances that humira will work and I won't need surgery?

Right now I feel like I'm screwed...I will need surgery regardless but I'm not sure how real of an assumption this is.

what are all your thoughts? I have been pretty much med free for 2 years (unfortunately because I never have any symptoms so I had no idea I had inflammation).

Thoughts/advice/comfort? Anything will help. thanks in advance.

-L
Posted 5/5/2014 12:31 AM (GMT 0)
Hi Crohnssucks, (and yes it does).

First of all, you're not "screwed". The fact that you've been able to get by without meds for two years is encouraging.

I think you might need more diagnostics, beyond an ultrasound, before you decide on a treatment plan. You might consider a colonoscopy, an MRE or SBFT. This should give a clear picture of what you're dealing with.

The stricture you're experiencing may be just simple inflammation, and could resolve with the right medication. The abscess may need to be drained, as an antibiotic can't penetrate the outer skin of the abscess.

I don't have any experience with micro perferations. Not sure if this can resolve.

Humira or Remicade will likely be you're best bet, after you get a firm diagnosis.

Hope you're feeling better soon. Try not to worry. I'm sure you're GI will get things under control
Posted 5/5/2014 11:46 AM (GMT 0)
I have had crohns for 12 years, my children call me "bubble guts". I hate having this disease. I hate the noises my insides make when I am speaking to people. I hate the pain, not being able to work, running to the toilet umpteen times a day, the depression, the swelling, not knowing where the toilet is always, running out of toilet paper, the not knowing if I am going to run to the toilet when out for dinner, the inability of eating certain foods that are going to make everything worse, being scared of using a toilet outside of the home, the pain brought on by the drugs the doctors give me, being scared of travelling because of unknown areas, not knowing if my insurance protection payments are going to continue. Yes, I look healthy on the outside, but inside, my joints are aching, my muscles hurt, I am often asked "when is your baby due?". I don't have any energy, it takes me 2 hours to get out of bed (and yes, accidents occur), if I stay still for more than 20 minutes then I can't move. I won't win any marathons to get to the toilet because everything else hurts. I can't make love to my husband because of the pain, that kills me. I am so very, very sad. I cry alot. I just wish this horrible disease would go away. I hate it.
Posted 5/5/2014 12:49 PM (GMT 0)
Hi crohnssucks,
I think it's worth a shot to give the Humira a try. You are going to want those antibiotics to see if they can heal the perforations and abscesses even if you end out needing surgery. I agree with 73 monte that you need more that an ultrasound to see what is going on, like a CT or MRI. I'm sorry for all you are going through,

Lea Hondow...welcome to HW. I am sorry you are so ill. What are your doctors doing to try to help you? What medications are you on?

I agree with you both that this is a terrible disease.
Posted 5/5/2014 4:54 PM (GMT 0)
Hi Crohnssucks,

Probably it will heal, if you stay away from the trigger foods for some months. I guess your intestinal wall has become thinner in the inflammation area, which is normal. I have known people who have had inflammation in the complete colon. I don't think 25 cm doesn't take too long to get back to normal as long as you keep an eye on your diet. I would suggest you to take any medication to get inflammation under control.

Are you sure that you didn't have any symptoms? decreased appetite, mental fog, dizziness, lightheadedness, abdominal pain, diarrhea or loose bright stools? You might have neglected the symptoms and avoided the medicines.
Posted 5/5/2014 9:57 PM (GMT 0)
Hi Gumby44, I'm on Humira injections and Methotrexate. Infliximab infusions gave me major joint pains after 4 treatments. Azathioprine nearly wiped me out. On antidepressants as well. I notice you are taking Metamucil, if I took that I wouldn't be able to move more than 2 metres away from the bathroom for 48 hours, that stuff kills me.

Hi Usher, I'm glad you mentioned mental fog, dizziness, lightheadedness, abdominal pain, diarrhea.... I have all of that along with the usual Crohns symptoms.
Posted 5/6/2014 1:02 AM (GMT 0)
This sounds concerning to be sent home with any kind of perforation; I wish they would explain what that entails. I mean, can bacteria pass through to the peritoneum with this kind of perforation? I had a similar experience with being told I had a gas perforation, but I was treated for it in the hospital.

Just keep an eye on things, especially fever and abdominal swelling. I swelled so much from what I had that it arched my back.

Take care and I hope those antibiotics do the work.
Posted 5/6/2014 4:46 PM (GMT 0)
Thanks all,

I should mention I had a CT done in hospital a month prior to this discovery, and apparently the micro perforation was there even when I had my CT but the docs somehow missed it. So if the antibiotics do what they are supposed to (which I find out on monday since I have a follow up ultrasound) I hope I will be healed enough to start Humira ASAP.

I have negative side effects from the antibiotics, but aside from that no pain, no fever, etc. I feel horrible for anyone with severe Crohn's symptoms. Although my insides look bad, I have always felt 'ok'. But now I'm starting to think, maybe I actually did have symptoms all along - fatigue etc and I just haven't put two and two together.

I find myself going in and out of feeling depressed thinking about the possible outcomes.

1. Antibiotics work, start humira
2. Antibiotics don't work, get surgery
3. Humira doesn't work -now that would suck pretty bad.

I guess I should just try to be hopeful but I hate living in constant jeopardy and I wish I would have been more persistent with getting answers even though I Felt okay. cry sad
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