Hi. I am so confused and need help. I was feeling normal in April and had my annual scope done for my pouch. The dr said I had some inflamation and gave me cipro to take even though I had no symptoms. Once I was off the cipro I started going downhill. I then had stomach burning pain in my upper stomach area due to onion and garlic and was put on cipro again in June for a month this time. Both times on cipro I felt good and had no symptoms. Once off cipro in July symptoms of burning stomach pain and pouchitis returned. Stomach and pouch scope done in late July showed normal stomach and severely inflamed pouch. I was put back on cipro for a third time and had another scope. This time moderately inflamed but I felt symptoms throughout course of cipro as I felt I had become resistant. The doctor now says because the cipro did not take away all the inflamation that I have chrons and is unwilling to consider trying vsl or another antibiotic. He wants to go for remicade. I think there are two problems : an over growth of bad bateria due to antibiotics and an upper stomach area problem which leads to acid production which then burns my pouch. Is this possible? Does it sound like I have chrons or am I just resistant to cipro now. I would really appreciate feedback.
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Cipro only works for me for like 4 days. I take Omniceff it is stronger than Cipro and I thin it is the best antibiotic out there and I don't build up a resistance to it actually. Pouchitis sounds like it is your thing. I get Bacteria Overgrowth and that does not show up on scopes.
Good to be,
You may be right and there is one very good way to test out your theory...try a run of probiotics for 1 month and see how you do...Not all of us do well on cipro or other anitbiotics and if it is bacterial overgrowth the probiotics should help...start out with the OTC brands if you like and go for 30 days charting your improvements as you go...Cutting out white flour, sugar and other bacterial stimulants may help you too.
Keep a food diary where you note not just what you eat but when, with what other foods and and liquids (beware of sugary drinks and juices)...
You may just find that you have a certain measure of control over your body by checking the chart...
Sharon
You may be right and there is one very good way to test out your theory...try a run of probiotics for 1 month and see how you do...Not all of us do well on cipro or other anitbiotics and if it is bacterial overgrowth the probiotics should help...start out with the OTC brands if you like and go for 30 days charting your improvements as you go...Cutting out white flour, sugar and other bacterial stimulants may help you too.
Keep a food diary where you note not just what you eat but when, with what other foods and and liquids (beware of sugary drinks and juices)...
You may just find that you have a certain measure of control over your body by checking the chart...
Sharon
This confuses me. I have had chronic pouchitis since my takedown over 16 months ago with three scopes showing mild inflammation (although I do think it is worse now as the augmentin is no longing cutting my symptoms as it used to). Neither my colorectal surgeon or GI have diagnosed me with crohns despite the inflammation in my pouch. As a matter of fact, both said everyone with a jpouch has some type of inflammation in it.
Have you had a complete upper bowel series to see if you have inflammation anywhere else in your small intestine that could also be a source of your pain or would indicate crohns? Ae you having the other typical symptoms of pouchitis like fatigue, increased frequency, urgency? Have you tried nexium or pepto bismol to help with the burning stomach pain you are describing (but is it really your stomach if the scope comes back ok)? Have they biopsied your stomach for bacteria? Have your scope biopsies confirmed crohns?
I also have chronic upper stomach pain that I do not know if it is due to the pouch or the antibiotic I take two times daily. I can tell you that when I miss an antibiotic dose, my stomach pain is less. I have been taking VSL3 DS for over a year with what I think is little help at all especially while taking an antibiotic at the same time.
I am sorry for your pain as I understand what you are going through, It is very frustrating. I think I would request more thorough tests before moving to remicade. There are several other antibiotics you may try (augmentin being one of them with few side effects) before moving to remicade. Remember though that regardless of your diagnosis, you need a medication that will help with your inflammation and if the antibiotics are not cutting it biologics or immune suppressants are usually the next step. The other alternative is pouch removal.
Have you had a complete upper bowel series to see if you have inflammation anywhere else in your small intestine that could also be a source of your pain or would indicate crohns? Ae you having the other typical symptoms of pouchitis like fatigue, increased frequency, urgency? Have you tried nexium or pepto bismol to help with the burning stomach pain you are describing (but is it really your stomach if the scope comes back ok)? Have they biopsied your stomach for bacteria? Have your scope biopsies confirmed crohns?
I also have chronic upper stomach pain that I do not know if it is due to the pouch or the antibiotic I take two times daily. I can tell you that when I miss an antibiotic dose, my stomach pain is less. I have been taking VSL3 DS for over a year with what I think is little help at all especially while taking an antibiotic at the same time.
I am sorry for your pain as I understand what you are going through, It is very frustrating. I think I would request more thorough tests before moving to remicade. There are several other antibiotics you may try (augmentin being one of them with few side effects) before moving to remicade. Remember though that regardless of your diagnosis, you need a medication that will help with your inflammation and if the antibiotics are not cutting it biologics or immune suppressants are usually the next step. The other alternative is pouch removal.
quote:doctor now says because the cipro did not take away all the inflamation that I have chrons and is unwilling to consider trying vsl or another antibiotic.
that seems strange. I would go to another doctor. He should be able to try other antibiotics first. sometimes you need a few courses to nip it in the bud (assuming it's not chronic). other antibiotics should be tried before biologics. i don't know why he is so quick to assume crohn's. i would ask another doctor.
Thanks so much for all of your replies. They have taken biopsies of the stomach and pouch but i have not heard if they seen evidence of chrons in those biopsies. I am going to see my family doctor and see if he knows whats in the reports and if he can send me to another specialist quickly. They only scoped my stomach and not the whole upper GI to my knowledge. I have taken zantac, tums and acid reducers for the stomach pain with some success. Sometimes the pain goes away after a burp. Also when I am laying down and press on my stomach about 2 inches below the triangle formed from the rib cage I feel a small kicking sensation, which makes me wonder if something is in spasmum. They also have me on a fodmap diet as the specialist think that I can't process certain foods anymore and I have lost a lot of weight in a short time frame.
One of the better antacids is pantaloc.
I am not certain if one can determine with absolute certain crohns versus ulcerative colitis.
As for bacteria overgrowth, I have taken cipro and Flagyl at the same time. In my case, I do not tolerate cipro well either, and can no longer take it.
It is also possible that diet is causing your symptoms. Have you tried avoid carbohydrates and sugary products? What about avoiding gluten?
Bread is a killer for me. gives lots of gas.
Good luck!
Cheers,
Solomin
I am not certain if one can determine with absolute certain crohns versus ulcerative colitis.
As for bacteria overgrowth, I have taken cipro and Flagyl at the same time. In my case, I do not tolerate cipro well either, and can no longer take it.
It is also possible that diet is causing your symptoms. Have you tried avoid carbohydrates and sugary products? What about avoiding gluten?
Bread is a killer for me. gives lots of gas.
Good luck!
Cheers,
Solomin