Abby’s Update: Cryptitis and a Defocography Study
by Abby on Tuesday, March 3, 2009 10:40Here’s the latest for me: We had ended my weekly dilations on February 13th, but the following week things got bad for me again. I have these symptoms that my surgeon is having a hard time figuring out. 1) I can’t control my straining when I have BM’s and my body does this type of heaving thing – very painful; 2) I have pain in my lower abdomen near my pelvic bone; 3) When I have BM’s they burn; 4) I run a low-grade temp (99.5-100); 5) The frequency of my BM’s increases; and 6) My joints in my hands and feet ache. (I think my UC is flaring in my rectum, together with some nerve problems with my pouch – we’ll see . . . )
So on February 20th my surgeon did a biopsy of my rectum and of my j-pouch and dilated the opening to my pouch one more time (for good measure because she was already in there). She also started me on a five day course of Cipro (which I ALWAYS feel better when I take Cipro, which I think is sort of telling about what’s going on). I did feel better until just a few days after I stopped the Cipro and then the symptoms began again.
The results of the biopsy showed that I do not have pouchitis, but that I do have cryptisis in my rectum. I don’t know much about cryptitis at all. My surgeon told me to start doing the nightly mesalamine enemas again, so I am. I’m going to see her for a follow-up appointment tomorrow (the 4th – my birthday!). The only difference I’m noticing with the nightly enemas is that my joints don’t hurt any more at night, which is a good thing. The rest of the symptoms are still there (though the fever thing hasn’t been an issue lately).
I am also scheduled to have a defocography study done on March 27th because my surgeon believes there may be some nerve damage or something in my pouch. Has anyone had a defocography study done before? Apparently they put barium in me and then take x-rays of me while I’m having a bowel movement. I’ll let you know how that goes and what it’s like. I believe my surgeon said that if there is nerve damage that is causing the pain and problems when I have BM’s, that she would need to go in and revise my j-pouch. That would mean a temporary ileostomy for me for a while until the revisions healed. She said there would also be a possibility that the pouch revisions wouldn’t work and I would end up with a permanent ileostomy.
Emotionally I’m hanging in there. The pain is pretty tough to deal with on a daily basis. Depression has reared its ugly head once again for me. So I’ve started seeing a psychiatrist on a weekly basis for meds and counseling, which has been incredibly helpful to me. I’m still hopeful that j-pouch life will work for me! There are just more issues to sort through than I anticipated. Time can’t go by fast enough when you’re trying to find answers either! (Although tomorrow I turn 34, so I’m actually hoping time will slow down just a little bit for me!)
-Abby
Redheadedmama says:
March 4th, 2009 at 7:55 pm
Hi Abby! I’m sorry to hear you are still having so much trouble. Have you seen a GI about the problems you are experiencing? A GI may have a different take on things than your surgeon (might also help to get a second opinion). If you feel better on the Cipro, why doesn’t the surgeon prescribe a longer course of it? My GI recently put me on month long course of Cipro to treat what he thinks may be pouchitis (no invasive testing necessary!). My symptoms were all very similar to what you were describing and I feel so much better on the Cipro (I’m terrified about what is going to happen when I have to go off it this week!). Of course, I’m not a doctor, but why are they doing all these invasive and stressful tests when Cipro seems to resolve the symptoms? Just some food for thought . . . Great idea about the psychiatrist too. Best of luck!
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Megan says:
March 5th, 2009 at 7:39 am
Abby, well, happy late birthday! Sorry I didn’t check in sooner, we’ve had a crazy week here in Georgia with snow and all sorts of chaos.
W
ow, this sounds terribly challenging, you’ve had so many issues – so many. If you haven’t already you should visit http://www.jpouch.org and post your symptoms there, Jan Dollar or someone else may be able to provide some more advice that is medically relevant. But I do agree with our Red Headed Mama that you should talk with a GI, does seem like a lot of test if in the past Cipro helped. Also, sorry that the depression is back, somewhat to be expected considering the challenges you are continuing to experience. Have you read the book the Power of Now by Eckart Tolle, I know that book was really helpful for me in some really hard spots in my life when everything was so huge, it taught me to regroup and deal more with the moment. Keep us posted! Megan
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Abby says:
March 9th, 2009 at 9:33 am
I do have an appointment with my GI today in fact. He’s just a very in demand person and I can never get in to see him when I need him (which I will talk to him about today too!). When I went for my now bi-weekly dilation (that’s progress right? not weekly, but bi-weekly?!) on Friday my surgeon scoped my pouch and said that I have pouchitis. I’ve been on the Cipro for a few days now and really feel a lot better. I’m beginning to know what symptoms are associated with what issues now – (blood, gas, rectum pressure – UC; straining during BM’s – dilation; pelvic pain – pouchitis) and that helps me feel a little more empowered.
My surgeon did put me on a three week course of Cipro since I told her I noticed I feel better when I’m on it. And sure enough – I’m feeling better again!! It makes me so happy to know that I can have days where I’m practically pain free (for some reason I feel like Mary Poppins when I write that)!! Thank you so much for you all your continued support. You all mean so much to me. And I will check out that book – thanks!
Abby
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Mairead says:
March 10th, 2009 at 5:16 am
Hello Abby, I was on-line checking into what a video defocography entails because I am scheduled to have one on March 23. I’m anxious about it, I was diagnosed with cauda equine syndrome in 1998 and have been suffering many of your same symptoms ever since. I feel like I live at the Dr’s. Do you have any words of wisdom for me? When is yours scheduled for, same day-I think. You can’t really tell me anything if thats the case, but my thoughts will be with you anyway.
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Abby says:
March 10th, 2009 at 9:57 am
Hello Mairead, I wish I had more information for you! Perhaps you will have to be the one telling me what to expect. My defocography study is scheduled for the 27th, though there’s still some question about whether the equipment will be here in time for my appointment or not. I’m keeping my fingers crossed. I’ll be sending you positive thoughts as well! -Abby
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Jenelle says:
March 11th, 2009 at 4:30 pm
Hi Abby,
I wanted to say kudos to you for bringing up counselling and mental health surrounding such chronic illness. I think it’s important for people to realize that those options are available if the need arises, and seeking help for things outside of your physical health is just as relevant — we need overall health, not just a healthy body!
Jenelle
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michael says:
April 12th, 2009 at 6:11 pm
My wife is having similar problems to those that Abby describes, so we’d be very interested to hear an update. She had her take down in 12/08, was doing fine until early 2/09, then had an ileus, putting her in the hospital for a week. Now has the same difficulty with movements as Abby describes (burning, cramping, up to 14 per day). We have the defocography this week. No one has suggested a dilation but perhaps that will come after the study. Our surgeon did not do the original surgery. The new doc (old one retired) does not like the ileorectal anastomosis, preferring the ileoanal, so we’re afraid he’ll suggest surgery to revise the pouch or perhaps will tell us we have to go back to an ileostomy. My wife much prefers a working pouch but life is pretty miserable right now.
Thanks.
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