Flare Symptoms Changed

[tex]

And the problem that pattern of behavior causes for many of us, is that when our doctors don't know what to do, they reorder the same tests, and when they find nothing, they continue to recommend the same treatments. In other words, they keep doing the same things, in the futile hope that something will accidentally work. Most of us have found that when what we're doing doesn't work, it's time to try something else.

I hope they can come up with some new ideas.

Tex

[cloud9er]

Tex,

It’s a bit frustrating but I do think it’s a good idea for us to be seen by gastroenterologists so that they can do research and together we can work out how to treat the disease and help other patients. They may well advise Budesonide long term, move on to immunosuppressants or find something else wrong that is causing the symptoms

Kind Regards,

Amy

[tex]

Like you, I certainly hope that the medical community eventually figures out how to treat MC, but I'm not holding my breath. MC was described in the medical literature almost half a century ago (47 years ago, to be exact), and the progress that the medical profession has made regarding successfully treating MC, since then, has been rather minimal. This forum was created almost 19 years ago, and at the time, we (the founding members) were optimistic that a medical solution was "right around the corner". Obviously that hasn't happened, because they still don't understand the disease, after all these years.

Tex

[cloud9er]

Tex,

Do you think they are getting close for Crohn’s or UC?

All,

My tummy has gone back to square one and lost all of its form, despite taking the full dose of Colesevelam still. Tummy has deteriorated since I last mentioned it. I’m going multiple times a day (probably 6-10), urgency has returned, I’m seeing little bits in my diarrhea which i’m assuming is undigested food, I’m nauseous, not eating much, I’m losing weight. This time I feel dehydrated and struggling to not feel drained or thirsty. I had pain and soreness in my upper abs this morning which is unusual for me but it could have been gas maybe. This could be some sort of virus again. I have gone NHS this time so I’m not sure what the wait will be, might be after Christmas in the new year!

Kind Regards,

Amy

[tex]

The first time I met my previous doctor (my GP), he didn't even finish shaking hands with me before telling me that he had read my book, and he believed every word in it. Then he proceeded to tell me that he had a son with celiac disease, and a daughter with ulcerative colitis, and they both keep their disease in remission by following the guidelines in my book. They take no medications. Unfortunately, he is now my previous doctor, because he moved on into teaching, during the pandemic, so I had to find a new doctor (who has been very disappointing, so far).

Gastroenterologists seem to be at the point where their only popular option, after budesonide stops working, seems to be prescribing a biologic, in order to deactivate the patient's immune system, making the patient a sitting duck target for any infection, virus, pathogen, or disease that decides to settle in. People are dying from issues as simple as contaminated food (something that rarely happened, previously), because they don't have a functioning immune system.

Surveys show that a relatively high percentage of Crohn's and ulcerative colitis patients are changing their diets these days in order to control their symptoms, even though their doctors almost always fail to even mention diet, let alone give dietary advice. So no, I don't believe they are making any significant progress in treating Crohn's disease or ulcerative colitis, either.

Tex

[cloud9er]

Hi all,

Slightly more positive update, the suspected virus symptoms have eased a bit and I have taken two more colesevelam tablets a day which have bulked up my stool The last few weekends I had to rely on Imodium for one day too. I can’t find any information for an overdose of colesevelam, although it looks like it can strain the pancreas or cause problems with biliary or intestinal obstruction. One website says it can help with blood sugar control! :o

Tex,

One thought about your reply, when I’ve been reading Crohn’s forums or seen comments on Crohns and Colitis social media posts, I have seen several people mention that they think the medical research community are close to a cure. I’m guessing you won’t agree with those statements but I thought I would share what I have noticed.

Edit: I found one website that said colesevelam can raise triglycerides. There is also the taxing of the liver too. Possible deficiency of fat soluble vitamins.

Kind Regards,

Amy

[tex]

That's certainly good news that your situation has improved.

Since bile acid sequestrants aren't absorbed, they remain in the intestines, and therefore they aren't really able to cause systemic effects. These are uncharted waters, but presumably an overdose of bile acid sequestrants might cause symptoms such as constipation, stomach pain, bloating, vomiting, heartburn, loss of appetite, indigestion, and upset stomach (in other words, only digestive system symptoms). That's mostly a guess, though.

If medical science is about to "cure" Crohn's disease and/or ulcerative colitis, what, exactly, is that miraculous breakthrough going to be based on? I must be looking in the wrong places, because I haven't noticed any research that would even suggest that some sort of breakthrough "cure" is eminent.

According to the U.S. Government's National Institutes of Health, on a web page last updated on February 20, 2023.

Crohn disease can affect any part of the gastrointestinal tract. About one-third of patients have small bowel involvement, especially the terminal ileum, another 20% have only colon involvement and about 50% have involvement of both the colon and small bowel. There is no cure and most patients experience bouts of remissions and relapse at unpredictable times. This disease leads to very poor quality of life.

https://www.ncbi.nlm.nih.gov/books/NBK436021/

Tex

[HockeyMom]

I take LOTS of cholestyramine!!! Like, I weigh 125# at 5' 6" and I've been taking 8 packets a day for 4 years now. I've actually taken up to 9 packets a day...mostly 8 seems to do it for me though. In addition I take quite a bit of betaine HCl with each meal and a digestive enzyme capsule.

Honestly, I do well. Not perfect, things vary from deer pellets to "perfect poop" to something a little looser than that. I'm good, have a good life and do what I want to do. I do wish I could take this in pill form. It would make my life easier as far as transporting the stuff and not being "overly" hydrated and needing to find a restroom an hour after I suck down that 12-16 ounces of water with cholestyramine mixed in!

I'm not sure about "overdosing" on bile acid binders. I understand they work just the way Tex explained them. I will admit that I felt pretty "bloaty" for awhile when I first started using 4 packets a day. But for me that was it...bloaty. Not nauseated or anything else. Never classically "constipated". I would say I don't have a BM maybe 3 days per year. Ya, I'm regular! My mom takes cholestyramine also and is fairly whiny about the grittiness of it. For some people I guess it's a big deal. For me...not a deal at all. It gave me my life back. I've kidded in the past that I'd eat purple dog poop every day if that's what it took. Gritty orange "Tang" twice a day seems like a small price to pay.

My labs all look good. I do take magnesium and fat soluble vitamins. I get my D3 tested every few months as I take alot of it to maintain my level where I want it.

Laine

[cloud9er]

Hi Laine,

I’ve seen mention of a maximum dose of 9 4g sachets of colestyramine here:

https://bnf.nice.org.uk/drugs/colestyramine/

The page for colesevelam states a maximum of 7 tablets. I’ve been taking 8 the last couple of days I’m guessing that like medication, supplements shouldn’t be taken around the time that colesevelam is taken?

https://bnf.nice.org.uk/drugs/colesevel ... ochloride/

Also when you didn’t take digestive enzymes, were you getting undigested food? I am seeing undigested food still, even if it bulks up.


Kind Regards,

Amy

[HockeyMom]

Yes, everything (meds, supplements, whatever) either an hour before the cholestyramine or 4 hours after the cholestyramine. That works for me because I don't have to take anything prescription other than the cholestyramine! I'm sure it becomes an issue for others who are trying to juggle meds.

I've resigned myself to needing to supplement things. Whenever I've tried to drop the magnesium or drop/cut down on the digestive enzymes and Betaine HCl....things start to slowly, slowly go bad. As in, my sleep starts to degrade/I start getting "twitchy" which tells me I need the magnesium...and my poop consistency starts going the wrong way. Honestly, I gave up trying to figure out what is in that poop as far as "undigested" stuff. I think you may need to be taking a longer view on all this. I tell people the gut thing is like trying to turn an aircraft carrier! Slow and steady lets you see what is/isn't working. Too many variables also gets confusing-how do you know what is helping if you keep juggling/changing half a dozen things at once? My take on it anyway...

Laine

(Ya, I know you can turn an aircraft carrier around quickly-I've seen those amazing You Tube videos!).

[cloud9er]

Dear Laine,

What digestive enzymes and Betaine HCL do you take please? Can you take them at the same time as the cholestyramine?

Kind Regards,

Amy

[cloud9er]

Hi all,

I saw the IBD clinic on 18th October, after a 4 month wait. I was told I would be sent for a repeat gastroscopy and colonoscopy, probably a 6-8 week wait but possibly in the near year. I haven’t heard about a colonoscopy, I had a letter a couple of weeks ago to say my bloods came back ‘reassuring’. I’ve received an appointment letter to see the IBD team on 25th September 2024!! They know I’m desperate to get pregnant, I said I’d like 3 before I turn 40 and I’m currently 33. I was advised to stop trying but I haven’t tbh as if I need IVF then it stops the year timer, I know that is selfish. They discussed the most likely care will be a repeat course of Budesonide but a longer dose. My symptoms worsen with each virus of which I catch everything. As you probably read my symptoms got worse but have started to improve again. Colesevelam has helped but is not stopping symptoms. I actually laughed when I read the letter

I seem to have steroid dependant MC. The NHS is broken as you may have read on other posts. I think I understand now why you are fed up and dismissive of gastroenterologists :(

Kind Regards,

Amy

[tex]

The U.S. healthcare system seems to be headed the same way.

Tex

[HockeyMom]

I take the digestive enzymes and Betaine HCl with my meals and like I said....I don't drink my cholestyramine for like an hour afterwards. I use the NOW brand Betaine HCl and have used a few brands of digestive enzymes-currently have Klaire Labs. I order this stuff on Amazon because it's just way easier and cheaper than trying to track it down here in Arizona. I just want you to know that steroids didn't help me one little bit. Like, not ONE LITTLE BIT!!! We are all different and I experimented with the digestive enzymes and stomach acid after reading about them here. Again, I firmly didn't think I had an issue with that!!! Who would?

Laine

[cloud9er]

Hello all,

Sorry I’ve not posted an update recently. I think I’m doing pretty well actually, I’d say fairly close to remission. I’m alternating between diarrhea or mushy stool, perfect bms and slight constipation. Number of times daily is currently 2-4, urgency has mostly improved. I had a brief mishap when I caught a suspected tummy bug from hubby, around a week or so long. My private gastro has returned to work, doing a 180 on previous advice, giving me the all clear to conceive (we have been trying for a few months anyway regardless). I have experienced 4 bloody spotting on tissue after a bm in the past month or so, when I experience slight constipation. I think it could be the colesevelam, food, water and magnesium intake balance. After the first one I actually saw said gastro the same day coincidentally, I had the glove and they told me I have an anal fissure. Irrespective of that they prescribed some probiotics which I haven’t taken regularly yet as I’m trying to get my bms consistent and I was doing well without, they may help with that though.
I still have a lot of bloating. I have reintroduced eggs and gluten free bread. I have also started acupuncture.

We are in Scotland like last year, avoiding the tap water and sticking to bottled water has done wonders although the first day my tummy was really upset as usual.


Kind Regards,

Amy