Bacterial overgrowth or remicade not working?

[empressreggie]

Hi I'm new to this forum and wanted some advice from other Crohnies. I was diagnosed last year with Crohn's in my transverse colon and likely have had this disease for the past 15 years but my GI didn't figure it out until it was so severe last year that I had a colonoscopy and biopsy. I tried Asacol, 6MP with no luck and I wouldn't do Prednisone (had been on that for severe allergies with bad side effects including not healing from sinus surgery) so went on Remicade. Induction therapy worked, but once I went on 8 week regiment I got symptoms back. Not as bad as before I was on meds, no bleeding and excruciating pain, but terrible bloating, gas, GIRD, exhaustion. My GI thought this might be bacterial overgrowth and put me on an antibiotic for 10 days which did make me feel better. Test for remi antibodies showed I hadn't developed antibodies so it should be working. Now, 4 months later I'm having the same symptoms. I take a whole regiment of herbs and supplements for Crohn's developed by my GP who does eastern/western medicine, have totally altered my diet so no alcohol, no processed sugar, only dairy Greek yoghurt, no salads or raw veg as I can't digest those, just fish and chicken, no spice, low residue. I had extensive allergy testing and I'm not allegic to gluten, do not have Celiacs and limit my carbs to mainly brown rice. I am very strict with my diet and have worked with food groups to see what triggers me, and I eat mostly at home to control this. No matter how little I eat I am bloated ALL THE TIME. I'm exhausted and drag myself to exercise daily (yoga, pilates, hiking, horseback riding). I've gained 8 lbs since being on Remicade which is totally strange as I'm eating very little, super healthy and exercise all the time. I'm back on antibiotics to see if it's bacterial overgrowth as there's a link to Crohn's and bacterial overgrowth. Makes sense also as biologics shut down immune system so bacteria can thrive. After 4 days I'm no better but will see what happens in 10 days and also waiting to get test back to see if I've developed Remicade antibodies.

My questions (sorry for the lengthy intro): have other people had issues with bacterial overgrowth? Weight gain with remicade? The worst for me is the bloating as I don't want to wear real clothes just yoga pants and feel awful all the time, not comfortable in my body. Remicade HAD been working and I was feeling a lot better, bloating was down so I know it did work at one point. It's all such a crap shoot with these meds and I know people who have had to switch biologics many times as they stopped working for whatever reason. I've had the idea to just go off biologics and take my chances with diet and natural supplements, even to try oxygen therapy (one-minute cure) to get away from this vicious cycle of being dependent on meds. I realize I can't do this until I get into some kind of real remission, which I'm clearly NOT in yet after a year of treatment.

So appreciate any insight, advice and support you all might give. Thank you for reading this and sharing your experiences. It makes the world of difference to have a community of people going through this disease, so many people "don't get it" and think what, you aren't better yet? It's crippled my social life as often I just can't get out in the evenings and as a single mom it's been very challenging.

 

[David]

Hi there and welcome to the forum I'm really glad you joined!

First, I'd suggest taking a look at our Small Intestine Bacterial Overgrowth wiki entry. You'll find some information there but also threads linked at the bottom of it where others on the forum are discussing it. In it you'll see it mentioned that often the SIBO comes back after antibiotic treatment. This is often due to complications associated with Crohn's Disease.

Second, I'd take a hard look at the Specific Carbohydrate Diet. If someone has SIBO and Crohn's Disease, I think it's a great one to try. I realize you're very limiting and strict with your diet, but even a few of the things you mentioned would be eliminated with this diet. What do you have to lose except maybe some bloating?

Be careful about just stopping the Remicade. One of the big things it does is promote mucosal healing which is what will really help you maintain remission for the longer term. I personally wouldn't go off it until my mucosa was shown to be 100% via endoscopy or unless I was having severe reactions to it. But that's just me

Again, welcome

 

[empressreggie]

Thanks, David for the response. I have looked at the Specific Carb Diet and will revisit it. Many things that are legal on that diet (most veg, garlic, onions) don't work for my system so I would just limit myself to what I can tolerate and what's legal (pretty small group).

I had all these expensive tests for food allergies and had no sensitivity to gluten so my GP said I didn't have to go gluten free. Actually, I don't eat wheat or flour, it's just rice from the SCD that I'd need to get rid of.

I agree that I can't go off Remicade now. We'll see if I've developed the antibodies which is why I may be flaring now and NOT IBO. I never had the breath test for IBO because my GI says almost everyone tests positive and one time antibiotics helped but so far not this time. Very complicated to figure out. Thanks again!

 

[rthiele]

I am foreve having bacterial overgrowth and having c diff and then going on antibodies for it. I am so sick of it

 

[Fosterfamily2303]

Hi I'm new to this forum and wanted some advice from other Crohnies. I was diagnosed last year with Crohn's in my transverse colon and likely have had this disease for the past 15 years but my GI didn't figure it out until it was so severe last year that I had a colonoscopy and biopsy. I tried Asacol, 6MP with no luck and I wouldn't do Prednisone (had been on that for severe allergies with bad side effects including not healing from sinus surgery) so went on Remicade. Induction therapy worked, but once I went on 8 week regiment I got symptoms back. Not as bad as before I was on meds, no bleeding and excruciating pain, but terrible bloating, gas, GIRD, exhaustion. My GI thought this might be bacterial overgrowth and put me on an antibiotic for 10 days which did make me feel better. Test for remi antibodies showed I hadn't developed antibodies so it should be working. Now, 4 months later I'm having the same symptoms. I take a whole regiment of herbs and supplements for Crohn's developed by my GP who does eastern/western medicine, have totally altered my diet so no alcohol, no processed sugar, only dairy Greek yoghurt, no salads or raw veg as I can't digest those, just fish and chicken, no spice, low residue. I had extensive allergy testing and I'm not allegic to gluten, do not have Celiacs and limit my carbs to mainly brown rice. I am very strict with my diet and have worked with food groups to see what triggers me, and I eat mostly at home to control this. No matter how little I eat I am bloated ALL THE TIME. I'm exhausted and drag myself to exercise daily (yoga, pilates, hiking, horseback riding). I've gained 8 lbs since being on Remicade which is totally strange as I'm eating very little, super healthy and exercise all the time. I'm back on antibiotics to see if it's bacterial overgrowth as there's a link to Crohn's and bacterial overgrowth. Makes sense also as biologics shut down immune system so bacteria can thrive. After 4 days I'm no better but will see what happens in 10 days and also waiting to get test back to see if I've developed Remicade antibodies.



My questions (sorry for the lengthy intro): have other people had issues with bacterial overgrowth? Weight gain with remicade? The worst for me is the bloating as I don't want to wear real clothes just yoga pants and feel awful all the time, not comfortable in my body. Remicade HAD been working and I was feeling a lot better, bloating was down so I know it did work at one point. It's all such a crap shoot with these meds and I know people who have had to switch biologics many times as they stopped working for whatever reason. I've had the idea to just go off biologics and take my chances with diet and natural supplements, even to try oxygen therapy (one-minute cure) to get away from this vicious cycle of being dependent on meds. I realize I can't do this until I get into some kind of real remission, which I'm clearly NOT in yet after a year of treatment.

So appreciate any insight, advice and support you all might give. Thank you for reading this and sharing your experiences. It makes the world of difference to have a community of people going through this disease, so many people "don't get it" and think what, you aren't better yet? It's crippled my social life as often I just can't get out in the evenings and as a single mom it's been very challenging.

I know this is an old thread ..but curious about your crohns . I also have crohns in the transverse colon and am on remicade...and have bloating. What was your intial symptoms of the crohns? Has the remicade since worked for you and do u still experience bloating?