I've had enough

Hey all of you sure sound like me with your symptoms. Thank you Susie, you've been through so much too, all of you have? I was questioning the amount removed as well, thinking I didn't have enough removed to have short bowel or mal absorption, well from the hospital records I got, it's about 68 cm's but not all the records sounded complete so I questioned the doctor about it and he said it was hard to record exactly with all the folds and bends in the intestine to get an exact amount? If I had strictures as they say, would there be folds and bends? I do the same thing as you, when I have an appt I set my alarm 2 hours prior and hardly eat anything and hope I can clear my bowel enough times before we leave? I eat low fiber, and low fat as well and play it by gut what I tolerate and what I don't? When I had an ileostomy, (it was reversed a year later) I ended up in ER several times with dehydration that could not be fixed at home? They said I was like a runaway train at high speed, not only was I losing solids but fluids would run through my bag as well, almost right after ingesting.. That is when I was told that I had short bowel, but I've been told a lot of things. Irritable bowel well it sure is irritated but the treatment for IBS is fibre which I cannot tolerate?. Yes stress also has an effect on me, and we have on going problems in this family?
All of you are so encouraging to me, thank you so much.

Thank you. I can't recall using milk of magnesia, but I have used products such as Pepto bismal, kaopectate, charcoal, probiotics, L-glutamine and several others I also used metamucil and Citrucel, but for me, anti diarrheals don't work as I had hoped to restore normal bowel function? Instead they are often irritating, while they do lessen the diarrhea in some cases, they often make it worse shortly afterwards, ,the very fluid stools turn to partially loose stools often with bloat, gas, urgency, discomfort and sometimes even pain, followed by days of relentless diarrhea. I've tried more, I've tried less. It just doesn't feel like a natural way of moving the bowels. Does anyone else feel this way that anti diarrheals don't work on them in a natural way, or is it just me? The only thing before that would address my diarrhea was anti inflammatory drugs, and Questran, but after 2nd to 3rd surgery, Questran no longer worked? My present doctor who is taken with the new biological drugs will not try me on anti inflammatories (prednisone) again? He said oh, the entyvio will work like it, but so far it isn't working like it at all or, maybe it is partially and I just can't feel it yet? While it is discouraging that entyvio won't always stop diarrhea, thank you for being honest and sharing your experience. Presently I am playing around with imodium and working up the guts to try the horse pill colestid again. I will try Milk of Magnesia . There's got to be something.

Sparkleplenty ,just wondering if it works for you because your body has a greater need for magnesium, and milk of magnesia fills that deficiency? Just a thought. Perhaps your doctor recommended that after seeing your levels were low. I am happy that it worked for you, since finding something that works is like finding a needle in a haystack, as they use to say.

Straydog, I've been toying with the Imodium and been starting it one at a time, then adding, because I wasn't sure how it would affect me, but today I will try 2 for starting and add as necessary,
Thank you both.

It sounds like you were not hydrated enough. You have to drink a lot of water of water the day before & even the day of your infusion. I had terrible veins, mine rolled & would blow when they tried running saline through. Oncology came down twice & managed to get a vein. However, they called my dr & said she needs to have a port. It was too hard to get a vein that would work. They would wrap my hand & arm with hot packs trying to get the veins to come up. Call them again today, don't let them forget & you fall through the cracks.

It sounds like the imodium is helping. If it's watery or loose stools I take it, if it's just soft I don't. You will figure out your balance. I hope you can get the weight back on.

Take care.

I would think you would be ok for a few days. I would call them today & get a time for Monday! If it's too late to call them today, drink well on Sunday & Monday morning with the thought of getting in some time Monday. Until you can get in drink plenty of water so that you are not prepared just in case.

I live near Vancouver and I read this thread with great interest. 1+1=2, may I ask what city you are in?

Thanks , I hope the rescheduled infusion goes smoothly as well. I've started extra hydrating today and will continue till my infusion, and hope my veins will show up more this time around. I wish Entyvio came in another form like an injection.

Thank you, I was doing just that at my Family Doctor, but I felt he felt intimidated when he asked me what do I want them for? He was charging me a fee and I don't know why, I just quit asking for my file and would ask for specifics even if he said my results are okay, like what was my blood count, what were my levels, so I was able to keep tabs somewhat? However I have not requested this of the Gastroenterologist? The last time I did ask him for my blood count and it was left at that.

Dorri, I did some digging around & found an article that said it was approved April 2020 self inject in Ontario!! Go to Takeda.com & you should be able to get more information about this. The big question is when will it be available to patients. I haven't looked at the website I listed but they said for more information to check there.

Wouldn't that be wonderful for you. I went from Remicade to Humira & the injection saved me a 60 mile trip every 4 weeks.

Let me know what you find out.

I checked the site & yes it appears it will be an injection like Humira every 2 weeks. I have horrible needle phobia but was taught by my gi's nurse how to inject & it was fine. Humira can be injected into the thigh or stomach. I never got the courage up to do the stomach, lol. The nurse showed me how to pinch up enough skin to do the injection. I have had heparin shots too, another reason I couldn't do the stomach. Believe me, the convenience alone was another booster for me.

I am glad that your labs came back good. I would think if things have changed in 4 months you would be worse off than you are, just my thinking. However, here in the US more gi's are moving away from the CRP because a person can have inflammation in their body not related to IBD. Instead they are doing the faecal calprotectin test because it targets what is going on in the intestines only. My gi does this test, no CRP, he said too unreliable. If you are not familiar with this test, do a google search, it will give you a better understanding.

I would not risk going off Entyvio to see if it's working or not. I agree with the drs thoughts on that one. That would be a huge risk to take. I know a lot of people end up with IBS when dealing with crohns & UC. I saw a great psychologist that helped me with the mental aspects of dealing with several medical issues besides crohns. I had never been down that path before & was sorry I hadn't gotten help a lot sooner.

It will be interesting to see how long it takes for the injectable to made available to patients there.

Btw, the syringes are auto-eject, they are not like a typical syringe no measuring, nothing like that.