Three Month Update

natythingycolbery · Post by **natythingycolbery** » Sat Nov 06, 2010 9:56 am

As it is now almost three months since I was first diagnosed with LC (and 4.5 months since the symptoms first started) I felt it might be time for an update on how I am doing with life, the universe and everything.

So since I was diagnosed, and it was established that the LC may have been triggered by the anti-depressesnts, I was withdrawn from these within a week of diagnosis. Exactly 24 hours after the stopping taking the AD's, the D stopped, no more treks to the toilet. I didn't have to change my diet (well I was told not to, I may change it in the future depending on how my health goes), I just had to change the medication, which I feel blessed for.

The day of diagnosis I was also put onto Pentasa 4g for 2 months then to be weened off slowly, which seemed to help in the healing of the colitis.

However, looking back the Pentasa may have caused a few problems along the way too, one month after taking it I started to get urine in my blood which lead to the Cystoscopy that I was supposed to have in September but then ended up having in October, I also had a blood test the day that I discovered the urine (Ironically 2 days after a previous blood test I'd had for my GI that came back negative for any problems) and it came back then that I was anemic, so onto the iron tablets for me. The cystoscopy came back clear, but speaking to my GI in October he said it was likley to be due to the pentasa as it has been known to cause kidney problem so he advised to come completley off the pentasa there and then (Oct 26th), he also discharged me 'until I need to go back'.

I have been off the Pentasa now for about a week and apart from slightly more mucus in my BM and some occasional constipation I have been relitivley ok. The constipation may however have been due to the Iron tablets, which I finished taking on Nov 4th, hopefully i won't end up with D again for a while. The only other side effect I have had since coming of the Pentasa is brain fog, however this could actually be due to any one of my other medical conditons which have decided to reappear in my life (I say reappear, more that they where lurking in the background and decided to make an appearence due to jealousy of the MC... if conditions can do that :))

I lost about 6kg in weight over the past few months and have been trying to put it back on since August, I have managed to get back up to 49kg but seem to be stuck there, however I'm not dangerously skinny and I am keeping an eye on my weight as we speak. I need to get back up to 54kg.

I do realise I am truly lucky to have not only had my concerns with my health listened to pretty much straight away but that I am also lucky to go into remission very quickly, something that many others on here have and continue to struggle with on a daily basis.

I also apologise if the above made little sense, I'm reading stuff from the renaissance era for uni and it is confusing my braincells!

JoAnn · Post by **JoAnn** » Sat Nov 06, 2010 11:16 am

Naty, it's good to hear you are doing so well and things are under control. Good luck on your studies, JoAnn

Post by **tex** » Sat Nov 06, 2010 12:54 pm

Naty,

IMO, if your symptoms stopped within 24 hours of stopping the med that was causing it, then there was no reason for your GI doc to prescribe Pentasa. I'm not aware of any evidence that Pentasa heals the gut. True, it can suppress inflammation, but once your clinical symptoms stopped, (after stopping the use of the drug that caused the inflammation), there shouldn't have been any source of inflammation, and therefore no need to treat it with any drug. If he had realized that simple fact, many of your problems would have been averted.

So, apparently, gluten-sensitivity is not a major trigger for MC symptoms for you. However, if you have other autoimmune issues, then avoiding gluten and casein might help to resolve them, if you are interested in trying to eliminate health problems without the use of meds. Many other members have found that the diet relieves other long-standing health issues.

Thanks for the update, and I hope you continue to do well,
Tex

Robbie · Post by **Robbie** » Sat Nov 06, 2010 3:21 pm

Naty,

Makes sense to me! Glad to know you're doing well.

natythingycolbery · Post by **natythingycolbery** » Sat Nov 06, 2010 3:58 pm

Tex, I was given the Pentasa before I started getting weaned of the AD's. (From what I recall, I saw my GI on the monday and was prescribed the Pentasa and the day after that started the withdrawal of the AD's). But also, I never had a follow up colonoscopy to check for this, but I believe this was due to the fact my GI does believe it will reappear some time down the line or something like that.

My other medical conditions are not autoimmune (I think)... I have GAD, Depression, High Metabolic Rate and Tendonitis, but I suppose they could all be linked.

Also I am being used as a case study too by one of my GI's students for their thesis so I will have to go back to the hospital from time to time.

Gabes-Apg · Post by **Gabes-Apg** » Sat Nov 06, 2010 5:21 pm

Naty

with all the tests and other stuff you had it has been a huge 3 months.....you have confronted so many emotions and memories, look after yourself and i am sure that the weight will increase, now that things are less intense and you are less unsettled.

say hi to your mum and dad

hoosier1 · Post by **hoosier1** » Sat Nov 06, 2010 6:18 pm

Naty,

I am also struggling to simply hold, let alone gain, my weight.

This is become one of my most difficult problems with MC, and one that I had not anticipated.

I hope you are able to pack a few on too.

Rich

natythingycolbery · Post by **natythingycolbery** » Sat Nov 06, 2010 6:27 pm

Alas, I weigh myself weekly, and today I am back down to the weight I was when I still had the D! However I shall not worry about it too much and onstead IO shall eat this chocolate bar that is sat in front of me!

Ok I'm hyper, I should shut up

hoosier1 · Post by **hoosier1** » Sat Nov 06, 2010 6:30 pm

LOL. Naty, I am going to put my scale away. Not much fun looking at the trend. I'd rather eat chocolate too. Good idea!

Post by **tex** » Sat Nov 06, 2010 7:27 pm

Naty,

Thanks for the explanation. Now I understand. Yes, if you are the subject of a case study, then that explains a lot of things.

In the long run, though, I doubt that the D will return, as long as you avoid the type of medication that caused it in the first place. If you had any other autoimmune diseases, I would have a different opinion, but since you appear to be free of autoimmune diseases, I feel that avoiding that drug, (or family of drugs), will be sufficient to keep MC from returning. If I turn out to be wrong, at some point in the future, please remind me of my mistake.

Tex

natythingycolbery · Post by **natythingycolbery** » Sun Nov 07, 2010 6:02 am

I shall keep you updated on the if the drugs cause a flare up thing. And I shall let you know if it is ever possible to access the case study I am a part of online.

Linda in BC · Post by **Linda in BC** » Sun Nov 07, 2010 11:19 pm

Hi NatyKaty ( I hope you don't mind my calling you that.. it is my pet name for you since I made that mistake

;

I am so glad you have not had to go on to a gluten free diet, with your having trouble maintaining or gaining weight! I have been GF ( and a whole bunch of other things) for 5 months now and for the first couple of months I kept on losing weight (lack of goodies and snacks

) and got down to 50 kgs (110 lbs) myself ( I have not weighed so little since I was a teenager... ) Now that I am on the Entocort and the D. has completely stopped, my weight has stabilized and I have actually gained .5 kg ( a pound) but I am finding that it is very difficult for me to gain back the weight while eating such a restricted diet.

I hope the brain fog is lifting and that you have bright brain days soon! Enjoy studying about the renaissance era, and enjoy university. It is a wonderful time of your life.
Warm regards,

Linda

natythingycolbery · Post by **natythingycolbery** » Mon Nov 08, 2010 7:24 am

I like it, I'll add it to my collection of Nicknames.

I may actually be going gluten free, the D may be on its way back, I'm starting to get some of the symptoms that I had when I first started with this all in June

I spoke too soon!

Linda in BC · Post by **Linda in BC** » Mon Nov 08, 2010 10:11 am

Aww. I am sorry to hear that.. RE: Your quote in your signature... "I am a bit worried about going cold turkey" of the drugs.. hopefully you are not so worried that the stress is causing your problems. How is school going? Remember stress is one of our worst enemies so try to take extra good care of and nurture yourself these days, OK?

I hope it abates soon. What drug ( drugs) did you just stop using?

:bigbighug:

Linda

Kari · Post by **Kari** » Mon Nov 08, 2010 11:03 am

Hi Naty,

It was so nice to see an update from you, and hear that you're managing reasonably well - good for you. Your idea of going gluten free can only help. It seems to me that the problems related to gluten in the body build up gradually over time, until it manages to do major damage. I don't know what gluten free products are available in the UK, but if it's like here, there is a great variety, so it should not be too difficult to do. There is a lot to be said for being proactive!!!

I truly hope that your fears about a relapse are unfounded - take good care of yourself and keep us posted.

Warm regards,
Kari