Has anyone had these symptoms? Please help :(

[Lawrence89]

So I started infliximab about a month ago and for the first couple of weeks everything was perfect, it got rid of the pain I was having almost instantly. Then I had a blockage, no big deal, but what's happened since is really getting me down and I just don't understand it.

I've had Crohn's for 10 years now and I've had these symptoms maybe two or three times, but for the last couple of weeks I've been getting major bloating every 2-3 days and what I call 'bubblegut' where I can feel tonnes of gas gurgling about but I can't pass wind. It usually starts mid afternoon and either just sorts itself out by late at night or I'll find myself waking up throughout the night until morning with what I can only describe as explosive diarrhoea. I'm not getting much pain but it's so uncomfortable trying to do anything and sleep with gas rumbling about inside you. Since I started infliximab I have been eating more sugar because I figure if I'm on meds (I haven't been on anything the last 5/6 years) then I can allow myself some treats so I'm worried it's a bacterial overgrowth type thing but I take probiotics and stuff and like I said this has never happened before.

If anyone's had a similar experience or has some reassuring words they'd be hugely appreciated because I'm feeling pretty depressed atm.

 

[RNGirl]

I can't relate to the Infliximab as I have never been on it. I will say I had gut issues, gas diarrhea etc. with increased sugar foods as well as fructans and fructose. I have been tons better cutting way back on high fructose fruits and high fructan vegetables. I am gluten free as well. Wheat is high carb and affects you the same way too. A naturopath diagnosed me with fructose malabsorption. I am just getting a handle on this whole issue. Hope this gives you something to ponder. Good luck, this stuff is tough!

 

[shamrock15]

I believe your answer is in your original question. You mention having a blockage within weeks of starting infliximab (remicade). it is highly likely that the inflammation isn't completely gone yet as the symptoms you are describing are classic partial obstruction symptoms. Wouldn't call them no big deal as they can easily become one. I would definitely reduce the sugar right now, let your GI know about your current issues and see what the response is. Even though you may get relief quickly from remicade, it is highly unlikely that your bowel has healed from previous inflammations quite that quickly. You may require adjustments to your remicade or have a second medication added to finish things up. Fingers crossed that it gets resolved quickly for you.

 

[Lawrence89]

Thank you both, I'll definitely play it safer with the diet for a while. Shamrock, I've recently started taking Azathioprine too so hopefully that combination works nicely. Is it possible that the Infliximab is causing extra swelling in already swollen areas? I seem to remember my GI saying about how it might cause extra scar tissue to develop so it might cause some issues. That might explain my symptoms at the moment? The thing that makes me think this is occurring is because I'm not getting any cramping pains just this massive bloating and uncomfortable bubbling in my guts followed hours later by diarrhoea.

 

[shamrock15]

Remicade is supposed to prevent further inflammation, so I can't really see it creating more scar tissue. Azathioprine is my second med, it finally allowed me to hit remission after 25 years of continual issues. Both of these meds combine to prevent the inflammation process. As far as I understand it, there are two steps to it and each of these meds acts on a different mechanism. There are plenty of much more knowledgeable members here, hopefully one chimes in.

 

[Lady Organic]

I have left sided colitis and when my colitis is at moderate stage I can get these long rumbling gas. its like if the food remains liquid in the large intestine and move around with the gas and they end up coming out in D. where is your disease located? hopefully Imuran will help you.

 

[Lawrence89]

my disease is typical Crohn's (ileocecal region) and some perianal activity. And yet this uncomfortable gassy bloating seems to just happen all over the place, I can tell when its in the large intestine as I can feel lumps of gas along the sides of my stomach when I get all bloated.

 

[Grant]

I get terrible bloating but thats from Questran Light. Its appalling tbh & leads to diarrhea which is annoying because it defeats the object of being on Questran.
Rgds
Grant

 

[crohnsinct]

Hmmm...I was also thinking maybe attributable to the partial obstruction. However, it looks like you have just completed the loading doses of Remicade and are now waiting for your first official longer cycle. Remicade is metabolized by everyone at different rates. The docs just start with the 8 week cycle at first but really have no way of knowing if you will make it the full 8 weeks without symptoms returning. It isn't uncommon for people to switch the intervals a lot at the beginning and maybe even dosing until they settle on what works for them. It took us a full 6 months to figure out what worked for my daughter and we still occasionally switch things up. I would let the GI office know about the goings on and let them discern if this is an obstruction or Remicade issue.

BTW - we were also told that one of the risks of using Remicade was scar tissue because of the rapid healing that occurs. Our doc said it isn't common but does occur.

 

[ladysybil]

No help as to what is causing the gas but I find peppermint oil tablets really help. My gp prescribed them for me.