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Date Joined Jan 2006
Total Posts : 303
Posted 3/26/2008 3:33 PM (GMT -7)
Im 2 months post bowel resection and I feel great! I have not seen My GI since I was opperated on but now looking forward to seeing him to see how we should manage my disease process. 63 cm of my Illieum was removed.
1. Post resection, do you recommend any type of preventive CD meds? If so which med? And do you take if full strenght?
2. I am B-12 deficient,I get monthy injections. What else should I get tested for for possible deficencies due to the loss of my small bowel?
3. Has anyone out there tried the nasal spray b-12 injections? do you like it?
4. I continue to follow the makers diet, what breads besides spelt can I eat?
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Date Joined Sep 2006
Total Posts : 2527
Posted 3/26/2008 4:32 PM (GMT -7)
I am glad you are feeling so well post op, I only wish I had felt the same I had 4 surgeries within 12 months for CD you may have read about
them in the past on the board the last was in January. I was feeling pretty well after the ileus cleared (colon what is left all 1/4 of it decided to not wake up even after I passed 2 bms) I went home and had pain then a wound infection appeared which stemmed from a hematoma that formed while in the hospital which my doc lanced and kept me in longer to make sure nothing further happened it took 6 days for the infection to appear from when the hematoma was lanced...my surgeon was shocked I had gone home at that point. The CD remanifested after 3 surgeries and I was on pentasa to prevent the remanifestation of it and my joints flared so I was given a script
for humikra since I exhausted all other options either with the meds not working or having adverse reactions to other CD meds in the past. While awaiting the insurances approval a fistula appeared.
I saw my GI on the 17th and informed him I am having pain at the anastamosis site. As far as I was ever told prior to these surgeries my CD was strictly in the last 12cm of my terminal ileum...and that was what caused the 1st emergency Sx the darn thing perforated. My joints typically have more of a flaring problem for me but in more recent times they are very efficient at preceeding my flares. If I am still suffering from this pain (and I am still on 25mcg of fentanyl patch, and I also have 4mg dilaudid) in mid april I have to have another MRI I am assuming the mri enterography as opposed to a traditional MRI.
I have only taken B12 by mouth and the shot I now give myself the shot 1 time per month I still give it to myself even after labwork about
9 months ago showed the levels to be normal 1 day before I was due for the shot my docs also think it is a good idea. I had heard about
the nasal spray quite a few years back but never chose that option since my insurance didnt cover that and it was $40 per dose where as with the b12 shot I was script
ed 1000mg per day so I got 3 bottles of the shot for 10 bucks and there was a time when I was possibly going to need 1 shot every other week and when I flare I have had to have the shots even more frequent than that. After doing Humira to myself the b12 is like nothing since it doesnt sting at all, I just have very tough skin that even nurses and docs comment about
where after puncturing the top of the vial which dulls the needle it makes it even harder to puncture my skin.
Unfortunalty I have many food allergies as well as oral allergy syndrome so I would be unable to follow the makers diet or the scd diet without needing about
1000 needles full of EPI I hope that works for you I know that there is a book by the man who started the CD people since he has it himself on the makers diet and it includes food for other ailements etc. I am sure more people will be on that have tried or are currently on the makers diet who can help you with that.
I also am anemic and have tried iron sulfate which I tend to have a lot more pain so my GI may switch me to iron gluconate. I have taken B6 for many years I began when I started birth control since I would suffer from nausea and my GYN told me try adding that in the mix (that was prior to resections though. While in the hospital they added a multivitamin to my regiment again but my bone density was good and I no longer at this time need calcium supplements, I am not lactose intolerant though and do eat lots of cheese. When I was hospitalized they started me on Vitamin A and when labs confirmed on certain days I needed potassium. I take the Vit A on occassion I had been taking diff meds 3 times a day mostly vitamins in the AM and since my Sxs I have found I can no longer tolerate meds in the morning whether I eat or not I also tried to alternate when I took certain meds to see if it was one particular pill or another but it didnt stop the only time it doesnt happen is when I dont take any meds in the morning. On rare occassion I will take a dilaudid in the AM but that is maybe 1 every 2 -3 weeks.
I was taking Zinc prior to my surgeries since that helps in healing and CD depletes zinc levels while in the hospital they increased my zince to 220mg per day, I was taking 50mg prior. I am unable to find that high a dosage and when I arrived home I would take a total of 4 of the 50mg pills and found I felt ill wondering if maybe it was a diff chemical compound of zinc. I now take 100mg of it per day.
My GI knows I want children in the future but also feels I currently can profit from the effects of a prenatal vitamin now and forever since it has higher doses of everything in it. Some of the components are just slightly higher while other vitamins are double the value as a traditional daily vitamin.
Best wishes and hopes to you and your feeling well
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
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Date Joined Jan 2007
Total Posts : 451
Posted 3/26/2008 5:36 PM (GMT -7)
redspot - I'm glad to hear you're feeling so well after your resection. I finally made up my mind that I would go for the resection and called my surgeon's office today to schedule surgery. The scheduler was on break and didn't call me back today. Who knows - by the time she calls back, I may change my mind (again)! When I consulted with the colorectal surgeon last week, he said he would want me to take Pentasa after the surgery. My GI told me he would want me to stay on Humira. My thoughts are - once the strictured area is removed, I would rather take Pentasa than stay on Humira long term. One of the reasons I was considering surgery to get off Humira, since there are no long term studies available yet. Let us know what your doctor recommends.
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira and Entocort.
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Date Joined Mar 2007
Total Posts : 4527
Posted 3/26/2008 6:13 PM (GMT -7)
Hi Glad to hear you are feeling good I too had a resection and feel better now I am on Imuran and weaning pred . I feel good but am having sweats again. I take a multi vit. and B-12 once a month as well as calcium and vit D , I was taking the calcium and Vit. D because of the prednisone. You should talk to your GP about
what is best for your condition. lol gail
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Date Joined Apr 2005
Total Posts : 14995
Posted 3/27/2008 9:48 AM (GMT -7)
I take Asacol as my maintainence med since my resections and it works well for me. I also take B12 shots twice a month, as well as calcium with Vit D too. Everyone's Crohns behaves differently so I agree with Gail that you talk to your doctor about
what is best for you.
Been living with Crohn's Disease for 32 years. Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium. Resections in 2002 and 2005. Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.
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