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Date Joined May 2005
Total Posts : 24
Posted 10/7/2007 5:38 AM (GMT -6)
I was diagnosed with crohns 10 years ago in January. I had been on remicade and 6mp since Nov. 1998. That kept me in remission and I felt like a normal human being rather then a sick person. Six months ago I stopped the 6mp to try to get pregnant. Once I went off of the 6mp I discovered that remicade wasn't working the way that it used to. Unfortunately for me I was already on the highest dose of remicade and the doctor would not put me back on the 6mp due to the risk of lymphoma. The doctor wanted me to start thinking about
going off of remicade and trying humira. I never got the chance to try it. Last week I ended up in the hospital with an abscess in my small intestine (diagnosed with a CT scan). They couldn't drain the abscess because of it's
location (they would have to go through too much bowel to get to it). So I was given a choice of surgery or going home on antibiotics. However, going home on antibiotics wasn't really a good choice given that I wouldn't be able to have my much needed remicade infusion nor would I be able to go on pred or anything else to get the disease under control. The doctors were really pushing surgery as they were sure I would be back in a month needing surgery anyway. So I decided to do surgery. The abscess as well as diseased tissue was right where my colon and small intestine connect. They wound up removing about
4 inches in that area connecting my small intestine back higher up on my colon. I don't need a bag. Right now I'm a week out of surgery so I won't know how my crohns is acting until I heal from surgery. Right now it seems like every bowel movement I have is diarrhea and is black and tarry. The diarrhea is not so concerning as I know my intestines are healing, but the color is concerning me. I called the surgeons office and they said that some black and tarry stools are normal, but not every single one. My post surgery follow up appointment isn't until Thursday so I don't know if I should be concerned before then. I feel okay...if but a bit weak, which I assume is normal.
After I'm healed from surgery my GI wants to do a large and small bowel study to see if there is anymore diseased tissue in me. The surgeon didn't see any, but my GI wants to make sure. I've been wanting to get pregnant, so if there is no diseased tissue I will go off all meds to try to get pregnant. If he finds diseased tissue though then I will have to go on something for maintenence and we are hoping some small and safe for pregnancy will work.
What I could use right now is a bit of comfort. Is what I'm going through with the diarrhea and black stools normal? How did everyone else do after surgery? Did surgery put you in remission and if so how long did you stay in remission?
I am so scared. I never, ever wanted surgery...and now here I am with staples in my abdomen. I don't know what anything is going to be like from now on. At least before I knew what I could do and couldn't do. How will I know what I can eat or what I can do now?
Did I make the right decision? I mean, I must have since my doctors weren't giving me much choice. But sometimes I wish I wasn't given a choice you know.
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Date Joined Aug 2007
Total Posts : 15
Posted 10/7/2007 8:13 AM (GMT -6)
Hi! I too have had Crohns for over 11 yrs - mostly handled it with diet and drugs (Imuran...6MP...Remicade...Humira - tried them all) Until this summer 2007 they found a blockage at my ileocecal valve (where the SI and Lrg Bowel meet) - 30 cm was removed via laproscopy. Its now been 2 mths post-op and my bowel habits are regular - i usually have 2-3/day of normal, soft BMs (which unheard of pre-op!). I know I was pretty sick, nauseous and fatigued for a good mth post-op. I had diarreah for about
1 wk - very loose BMs. Everytime I ate something I was extremely nauseous. I was soo worried that I made the wrong decision...should I have had this? why do i feel the same way post-op, as I did pre-op? are these symptoms all normal? should I call the doc?....
I just had to keep telling myself (along with constant support of family) that it is a long process to recovery - everyone is different - I guess i was a little impatient, but things have slowly got back to being better - I am running and exercising now :D - attending university and feeling ok. Of course, I do not feel completely normal, since Crohns is a Chronic illness, but I am glad no in retrospect that i had the surgery.
You must be going thru a million emotions right now - My advice would be to give it time -rest ur body and give it the care u know it deserves - dont rush into things - if the docs say rest for 6 wks, rest for 6 wks - ull be glad u did! I have not heard of black tarry stools, but then again, everyone IS different.
I hope things turn out well for u - give it time :D
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Date Joined Jan 2007
Total Posts : 3200
Posted 10/7/2007 8:33 AM (GMT -6)
JSG, hi hun, I've had a couple of resections, but I have to say the only thing I experienced following surgery, apart from pain. was good
old diarrhea, but I did'nt have an abscess either, mine was obstruction. I guess you're tarry stools could be some residual ouzing (sp) from
the abscess. Having said that, I don't think it should be every time. There are a couple of people on here, that can perhaps give some
better advice, Judy is very good, but I just wanted to tell you that I think you made decision, and to hang in there, it should improve soon.
It's very early days. Good luck honey..
Too many years with CD
Two bowel resections, several obstructions.
Laughter is the brush that sweeps the cobwebs from our hearts
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Date Joined Aug 2006
Total Posts : 196
Posted 10/7/2007 8:47 AM (GMT -6)
I had an obstruction at the very spot you did. I was diagnosed in April 05 and had a resection in May05. Started 6MP in June 05 and Remicade in May 07. I was somewhat disappointed when the Remicade didn't do much. Found out recently that the diarrhea wouldn't ever go away. When they took the 6" out of me, they took the part of the intestine that digests bile. My system kept trying to flush out the bile by creating more liquid in the intestines. I changed doctors recently and he put me on a drug called Questran. For the first time in years, I'm solid. Once you are healed, talk to your doctor about
Also, I'm not sure if you have any partial blockages, but you might also ask if the pill cam test is something that they can do on you. If you have a partial blockage, they wont use that test on you. Worth asking.
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Date Joined Sep 2007
Total Posts : 22
Posted 10/7/2007 10:03 AM (GMT -6)
Have you been able to eat now - not liquid diet since the surgery? How long was your surgery? What was like after the surgery? When were you able to eat and what foods? How long were you in the hospital? Where is the scar? I am so sorry for so many questions. I am going for the surgery this week. Scared too. I just do not know what to expect. My GI said to expect D after the surgery for a while and to be in the hospital a week. But he said that my quality of life will be good and if we want more children (which we do) this is the only way. My surgery is due to a lovely blockage and scar tissue.
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