unique situation

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Boston
Regular Member


Date Joined Mar 2005
Total Posts : 61
   Posted 8/28/2017 11:16 AM (GMT -6)   
Hello all. I have not been on this form for quit some time and am look for some advice/experience/guidance. I will try making this short. Basically, this June I went to the hopital with stomach pain. Had an MRI cat scan with the IV infusion dye. They found inflammation as well as a small perforation, with no leakage. Instead of of rushing me to surgery, they kept me in the hospital for about 6 days pumping me with the usual meds. Took another cat scan a week later and the perforation was gone but the inflammation seemed to have grown some. Was sent home, took my 14 day dose of typical meds again (cipro ,flagyl ,prednisone. I finished that coarse and was back in the hospital later with feverish symptoms. This time, I was told there is not much more that could be done and needed surgery. Which at that point I understood. The part is that if i went into surgery that week, I would have to end up getting a temp colostomy bag, which I know no one really wants. My other choice for this to try and get around this option would be to try and drain the abscess around the inflamed area, hopefully so the medicine would work better. I had the drain in for about 6 days and had a picc line in to inject the medicine in directly for 25 days. 2 weeks in, I formed a blood clot under my right arm pit on the side of the picc line. Went back and they took the picc line out and have been on eliquis for the blood thinner for about 12 days now. The part now where I am looking for feed back is I was scheduled and still am to have surgery this September 12th. I am going to to be seeing a vascular specialist hopefully this week. I sort of have 3 choices and 2 would guarantee I would have a temp bag, which I do not want but would have to have if it came down to it. Or I could maybe wait another 2 to 3 months and hope not to flare up in the meantime. Any advice or experience anyone could provide would be very grateful. Thank you

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 330
   Posted 8/28/2017 3:54 PM (GMT -6)   
I don't really have any advice for you - but just sending my support. Sounds like you've had a hard time with this!

The one thing I would say is that the people I know who have had the temporary colostomy almost all feel that it really helped them heal / turn a corner. They tend to wish they hadn't waited so long avoiding it.

Every situation is different; but sharing this in case it's helpful.
Official dx in TI 2007 with with obstruction and 10 day hospitalization.
mild to moderate since then - frequent colitis Also IBS.
2014/16 - rectocele repair, bladder sling, endometrial cyst attch'd to colon
2017 - Increasing flares / Inflamm in ilieum ("red"), new diverticulitis
Current Meds: Asacol. B12 shots /Prev: Pentasa, 6mp, Cipro, Pred

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1741
   Posted 8/29/2017 7:13 PM (GMT -6)   
I'm not sure I understand your situation. So if there's no longer a visible perforation, and you're having symptoms, why are they recommending surgery? If inflammation is showing and progressing, why aren't they attempting to control it with medicaiton? Do they feel that they need to remove any of your small intestine at this point?

Just really hope you're feeling better soon, and get the right treatment plan.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3258
   Posted 8/29/2017 8:49 PM (GMT -6)   
I agree with both posters. If you're having symptoms in spite of heavy meds like biologics, then a surgery might be the wisest idea. However, if you haven't tried any meds, then I think that should be your next step.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 679
   Posted 8/29/2017 9:35 PM (GMT -6)   
I agree with all of the above.

You are in my thoughts and prayers!

Clo

PS. I ended up with a colostomy. I was very surprised by the ease of adapting to it. Surgery ...wearing a bag...is what you make it. Best of luck to you.
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,
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