Help needed

[Sophi]

Hi

I had a bowel resection and colostomy on dec 12. I have healed quite well but now all this time later I am plagued by a fluttering feeling mostly on the left hand side and now on the right hand side. My bowel movements are fine and I have almost no pain. I am not very active.

I am scared. I nearly died in the operation and no one can tell me what is happening

 

[David]

Hi Sophi and welcome

When you say a fluttering, I assume you mean in your abdominal region? I interpret from your post that it's not painful, more like a twitch or?

I'm sorry you're feeling scared Please try to describe what you're experiencing in greater detail and hopefully someone here will have an idea.

All my best to you!

 

[Sophi]

To explain more. I nearly died during surgery. This has made me anxious that I might need more surgery. I have been making good progress but lately have had some diverticular pain. I also get a fluttering feeling in my bowels mostly on the left hand side of my abdomen. Has anyone else had these symptoms. What do they mean

 

[Jaano711]

Hi Sophie
I am sorry you are feeling scared and anxious, as I am too. I nearly died after an anaphylactic reaction to infliximab. When I presented at the local hospital the duty dr told me to get a grip and that I had the flu. Funny thing was I was in a coma by sunrise the next day. I have learned to take everyday as it comes and do the best we can at what we choose to do. My biggest problem is I don't let those around me know how I feel. It's easy to make it all seem good, but much harder to keep juggling it all when you really feel like crap.

This disease sux, is scary and always feels like it has the upper hand. Don't let it beat you. Just because you have had one serious scare doesn't mean that it will happen again. After the infliximab disaster I was put on Humira, and I have to tell you that every injection scares me but the thought of not having it possibly scares me more. I had a small surgery on the weekend and was told that I need to have the whole permanent colostomy thing ASAP I am just waiting to hear when the surgery is. This scares me, my last resection 3 years ago wasnt exactly text book. I know i have to look forward and not back as each op is different. Don't let being scared stop you from seeing the dr and getting to the bottom of your latest setback. Sometimes the quicker we get it seen to the less we have to go through. I hope you have a good Gastro's and surgeon on your side. I started my crohns 'life' in Sydney and had a wonderfully Gastro. He used to tell me how much he hated crohns disease cause it only ever attacked the good people. He was also very positive and helped me make all the things I wanted happen.

I am thinking of you and hope that they can sort out you latest issue so you can get your freedom back. I know I couldn't give you any answers but with Crohns disease you get used to that.

Keep strong.

 

[mnsun]

HI,

I can relate to your "fluttering" feeling and that's not necessarily an indication of anything serious--from MY experience. However, I would only get that feeling very briefly, like, maybe 3 times a day for 10 seconds. I've never brought it up to my doc, but my guess is that it is some sort of jerky peristalsis going on.

If it is super persistent, maybe you should bring up some sort of ?muscle relaxing? type therapy to your doctor. Supposedly enteric-coated peppermint oil pills MIGHT work to keep that feeling at bay, however, those probably take a couple hours to reach the intestines so you'd probably have to take them every few hours to notice a lasting effect. I can tell you my symptoms were never long-lived so by the time I would take a peppermint gelcap, I would no longer feel that fluttering.

Perhaps a strong fennel seed tea would MAYBE be an herbal route to take as well. Do some research and think for yourself. For myself, these episodes never amounted to anything other than anxiety and uncertainty. Of course, I must re-emphasize, any constant sensation should probably be addressed by doctors.

Good luck.

 

[Sophi]

I think you are right. I put it down to a nerve maybe misplaced by my bowel resection trying to wriggle back into place. I have found in the last couple of days if I sit on the lounge and rock back forth a little it gets a lot better. Drinking tea seems to help may be as a flush agent.

I nearly died twice and I get scared something is going on like an abcess and I will need more surgery. Doctor has beem kind but no one has heard of my symptom

Thank you for the comfort of your words

 

[Sophi]

Currently I have had it two weeks. How long did it last for you?

 

[Sophi]

Slippery elm capsules and peppermint lollies have helped a little

 

[melodie]

Hey Sophi - I totally understand getting scared. I too almost died (my intestine perforated from gangrene) and even though it was 26 years ago I still get triggered if something happens that makes me think it's related to Crohn's. I'm guessing you had to spend some time in ICU etc which is horrible in its own right. I have never fully processed the experience (and I spent a LOT of time actively grieving what happened). There's not much written out there about being so sick you almost die and what that is like and how scary it is - not too mention that one is usually going through a very very bad flare to even get that sick. Sometimes I have to very strongly tell myself that these are just feelings and do NOT mean something bad is going to happen.

I think I know what you mean by fluttering - kind of like you feel movement inside but it isn't painful or even particularly strong? But it can be fast? I've had that and always attributed it to healing - it seemed to always happen when I was healing from a flare. I don't particularly care for the feeling, but in and of itself I don't think it's a sign of a problem. However, as others have said, if it is really persistent definitely check in with your doctor. If the doc tells you it means something could you post that here?

Good luck - hang in there.

 

[Sophi]

Strange news. Went to casualty with diverticular pain. Dr discovered large fungal infection in groin and last of cellulitis infection. This had caused the referred pain masquerading as diverticular pain. Dr treated skin issues and the diverticular pain disappeared almost instantly. What a relief. I would never had worked it out.

Just goes to show what a mystery our bodies can be. Thank you for all the help offered on this website. It has given me a lot of comfort