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Crohn's Disease Forum » General IBD Discussion » Time to finally manage Crohn's


04-30-2013, 11:45 PM   #1
afidz
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Time to finally manage Crohn's

After being of meds for 3 years for safety reasons I am finally able to go back on meds. My doctor and I decided that since I get tend to get bad side effects from new drugs and I have been on Humira before with no problems that that was the best route. He wants me to wait a little while longer because I do have a healing wound. (which is going great btw)
If you know my story then you can understand why I haven't had a colonoscopy in 5 years. I don't want to relive that awful day again. But, since my current GI has never scoped me and he is not the one that ruined my life and I need to make sure nothing has gotten worse with out being on meds for 3 years, its time for me to face the music and get it done. He wants to wait a littel bit longer, give my body a little more time to heal after surgery so he doesn't perforate my bowels. So , end of summer, early fall I will be going down that road.
One thing that I did want to ask you guys about....
My abdomen is retaining water like its no one's business. It started before surgery, and then only got worse. Now, it is seeping through my skin. My GI wasn't overly concerned, he doesn't think there is infection which is good. I am going to call one of my surgeons tomorrow to see if they think its a problem from their end. If not, then I will try to find a GP (Jennifer, finally going to listen to you) and see if its something they can help me figure out. But anyways, have you guys ever had this happen to you?
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

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05-01-2013, 12:18 AM   #2
Cross-stitch gal
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No suggestions for you afidz. But, thankful to hear that you're finally starting to feel better! It's possible that you might have a colonoscopy buddy this year. We'll see what my GI says too. Although, mine could be sooner than yours. Continuing to send hugs your way & hope to talk with you again soon.
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05-01-2013, 12:19 AM   #3
PsychoJane
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Did they ever tested you regarding that condition specifically. Are you aware of the cause of this water retention or is it absolute nothing as of now?
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05-01-2013, 12:23 AM   #4
afidz
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Right now, I have no idea what is causing it. I started retaining water in November when I had pancretitis, but it wasn't too bad. And then when I got out of surgery, I blew up. I could literally feel the water under my skin. It has calmed down some until a few days ago. I am so bloated and uncomfortable
05-01-2013, 12:38 AM   #5
PsychoJane
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Like I am aware that water retention can occur in crohn due to hypoalbuminemia. I saw it can also cause ascites (which I believe is what you are experiencing). Numerous factors may cause that conditions but I was wondering if it could be related directly to crohns. I don't have much advice, I only know that when I was a teenager they would keep me on on lasix when my legs were swollen (that people lovely called stove pipes as my ankles were mia, lol). Do you know if your water retention is related to your inflammation as of now (I guess this is the question I meant to ask earlier)?
05-01-2013, 12:41 AM   #6
PsychoJane
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aye aye aye... This sure sounds unpleaseant...
05-01-2013, 12:56 AM   #7
PsychoJane
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Well I found this: "Disorders of the pancreas can result in ascites in a variety of ways. Acute pancreatitis (inflammation of the pancreas) can cause fluid accumulation as part of the inflammatory response. Chronic pancreatitis can result in malnutrition, leading to decreased total body protein, loss of oncotic pressure, and ascites." Maybe it is impertinent but with the little I know that is what I found out. I don't know if this helps you at all. :S
05-01-2013, 06:59 AM   #8
Ihurt
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I am glad you are doing ok! I can totally understand not wanting to do another colonoscopy after what happened with the first one. Have you ever thought about the virtual colonoscopy? Way less invasive, but only drawback is they cannot take biopsies. I mean if you do decide to do the colonoscopy, I would make sure the doc doing it is especially aware of what happened last time. When that happened last time, was it because the person doing it was negligent or was it because your intestines are very vunerable? That is the question. If it was because of the doctor being to forceful, then you will likely be fine this time around. In any event, I hope all goes well and you can get on a plan that helps you to feel a lot better!!!
05-01-2013, 09:55 AM   #9
afidz
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PyschoJane- I don't know if the water retention is from inflammation, it very well could be though.
IHurt- Honestly, I am not sure exactly what happened. SHE said that my intestinal wall was too thin so when she went for a biopsy it was too thin (as she told me in an accusatory voice) but I have always wondered how much of it was in her control. I will never know, but my current GI is great. He knows everything that has happened to me and he understands why I am scared. He has let me put it off for this long with out pushing the subject. I trust him but I can't help but think that the same thing will happen again.
05-01-2013, 10:00 AM   #10
mccindy
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As someone who will probably need a colonscopy this month, your story makes me nervous! I had a colonoscopy back in 1995 but none since then (which I've been told was a mistake, now - my NP recommends a colonoscopy every 3-5 years even when in remission). I'm not very excited about the whole process but I know it will be necessary to see what's going on in there, with all the burning and bloating I've had. I've had excessive bloating, but no water seepage. I've seen that in patients with poor kidney function before - are yours functioning adequately?
05-01-2013, 10:15 AM   #11
2thFairy
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Just curious--who is your GI? PM me if you'd rather.
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05-01-2013, 10:24 AM   #12
afidz
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I see Dr. Eidem at the Medical Center of Plano. He honestly saved my life 3 years ago. You?
05-01-2013, 10:26 AM   #13
afidz
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mccindy, I have no problem with going to the bathroom regulary so as far as i can tell my kidneys are working the way they should. Sorry to scare you with my story, that was not my intention
05-01-2013, 10:36 AM   #14
2thFairy
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I see Dr. Eidem at the Medical Center of Plano. He honestly saved my life 3 years ago. You?
My GI just recently stopped seeing patients. I have no need for a GI at the moment (since colectomy, no meds), but am always glad to hear of a good one in the Dallas area if I need one in the future. Thanks for sharing!
05-01-2013, 12:01 PM   #15
afidz
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Can I ask what area you live in? you don't have to answer if you don't want to. I have heard that Dr. Swaroop at UT Southwestern is amazing. My GI says he refers complicated cases to him for consult. UT Southwestern is too far for me, and that area is a mess, but if I got really sick I would consider it. As long as he doesn't operate out of Parkland at all.
05-01-2013, 12:06 PM   #16
2thFairy
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I'm in the Coppell/Lewisville area.

My GI wanted me to see Dr. Swaroop before my surgery, but his waiting list was too long so I saw another GI at UT Southwestern instead. I did go to a lecture that Dr. Swaroop gave and I was impressed with his information, but even more so at his communication during the Q&A time. I wish I had been able to see him as a patient.
05-01-2013, 12:11 PM   #17
afidz
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I bet that was interesting! Its a shame you couldn't get in to see him. Does he have his own practice or is he in a group? My brother in law lives in Keller so we use Lewisville as a half way point some times because the construction past that is horrendous. took us 3 hours once because they decided to bring airport traffic down to one lane
05-01-2013, 01:26 PM   #18
mccindy
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Don't worry about the scare, it just always makes me think about the "what-ifs" when I hear about others' experiences. I'm glad to hear your kidneys are working well, that's one plus! I hope things improve for you.
05-01-2013, 01:46 PM   #19
Jennifer
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Ya definitely see a GP about the water retention since it did start before the surgery. They will be able to run tests to find the cause and then be able to treat it (really? your GI didn't care and didn't have any ideas?). Often times water pills are given to help reduce it but I don't know if that's something you can do just yet not to mention you need to know the cause first.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
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Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
05-01-2013, 01:58 PM   #20
2thFairy
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I bet that was interesting! Its a shame you couldn't get in to see him. Does he have his own practice or is he in a group? My brother in law lives in Keller so we use Lewisville as a half way point some times because the construction past that is horrendous. took us 3 hours once because they decided to bring airport traffic down to one lane
The only info I have on him is that he is part of the gastro group at UT Southwestern. The airport road construction is a nightmare! They are rerouting something different every week, it seems.
05-01-2013, 02:24 PM   #21
afidz
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The only info I have on him is that he is part of the gastro group at UT Southwestern. The airport road construction is a nightmare! They are rerouting something different every week, it seems.
It seems like the NTTA wakes up every morning and says "how can we f#@& up 121 today? Not sure how much you are in my neck of the woods but it was (and still is) a huge mess at every major intersection. 121 used to be so easy to travel on!
05-01-2013, 02:27 PM   #22
2thFairy
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Yes, it definitely used to be!!!
05-01-2013, 03:43 PM   #23
afidz
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UPDATE: called my surgeon'ds nurse to ask about the fluid. She said its the fluid from my muscles healing and also the pathway from the drains healing, and it just broke through my skin. She said its pretty normal to happen and just to watch out for infection or change in color in the fluid and that it should stop soon. PHEW sigh of relief. But I do still need to figure out why I am retaining water so thats the next step...
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