Bowel Pain

[SallyB]

Morning all from a very chilly UK
I went for an amazing massage therapy yesterday and came out feeling amazing! My bowel behaved all day and I felt like my old self then suddenly I had the most horrific pains in my bowel which lasted all evening. I took buscapan but it didnt ease off that quickly. It's almost like my bowel doesn't want to stop being on red alert and for a short time when I was at my most relaxed wham it's back with a vengence.
I now think I have proved that stress plays such a major part in this disease, more than I think I realise.
I visited my GP this week and broke down in tears and she said she thought I needed counseling to help me cope with it and that all the time I am feeling so low my body won't be able to heal.
I had to come off the Pentasa as it really was not working and have been given some powders that are meant to deal with the bile salts.
I am visiting a nutritional specialist on Friday as I am now losing weight and think I need some advice.

Had such a good day yesterday but after that episode last night have been up about 4 times in the night so feel really tired. Had a major melt down this morning floods of tears I think it's due to tiredness, frustration and fed up with the whole damn thing!

I am trying so hard to heal myself without resorting to horrific meds and have cut out wheat/gluten,dairy,soy but the D still persists .
With Christmas coming and the only conversations and plans are centered around food and having fun it's really hard!

Sorry guys....just feeling so low today. You read on line the little information there is about MC and it's almost like it's a nothing kind of problem! I am tired, drained,want my life back, getting thinner by the day, miserable to live with,sick to death of rushing to the bathroom and just want to be me again!

[fatbuster205]

Oh Sally,
Sending you a huge hug! This is a horrible disease and it really can be very depressing. It is great that you want to heal this through diet but you may need to take meds for a while to give your body a break? Try and get some rest and me time in the meantime!
Anne

[Polly]

Hi Sally,

We have all "walked in your mocassins", so we know exactly how you feel. You do not ever need to apologize here for feeling low or wanting to rant and rave. There is a good chance you should be able to control your MC with diet alone, but it takes lots of patience. Would you believe that it was almost 9 mos. after I eliminated gluten/dairy/etc. that I saw my first formed B.M.? I had taken Asacol (similar to Pentasa) which didn't help me at all. Rather than move on to steroids as suggested by my doc, I decided to try diet alone. I often wonder why I hung in there so long - I guess it was because of the sypathy, support, and encouragement from all of the wonderful Potty People.

I also have found that stress is a huge trigger for me. The stress-reducers I have found helpful are regular exercise (aerobic as well as weights) and meditation. I suspect these might help you, too, since you had such a good response to massage. If you need some recommendations for good books on meditation, let us know.

How long now have you been avoiding your food triggers? Even though you may still have diarrhea, have you noticed improvement in other symptoms -like less aches/pains and brain fog? I found that fatigue was the symptom that persisted the longest.

A thought - some of us here have found that antihistamines are helpful (even if we do not have classic respiratory or skin allergies). There are 2 over-the-counter medicines in the U.S. that we have used - loratadine (Claritin) and ranitidine (Zantac). Also, some have found Benadryl to be helpful. Apparently quite a few of us have mast cell issues, and these medications target the mast cells.

Hang in there - better times are ahead. FOR SURE!

Hugs,

Polly

[humbird753]

Hi Sally - WELCOME!

I am another one who was diagnosed with LC in June, 2010. I understand the feeling of not wanting to take meds, as I chose not to myself. I joined this "family" a little over a year ago and started on the GF/DF/SF elimination diet. I don't know how long it's been since you've made your diet changes, but it does take some time before seeing results. Initially I noticed some improvement in 3 weeks, but for me the changes were gradual and became most noticeable this past month. Diet alone can work. I've done my share of crying and at times wondered if it was ever going to work. I think I was crying on a daily basis for months. I now find I don't have the extreme fatigue, am not "running" to the bathroom 25 or more times a day, clearer thinking, and able to get out without having to map out bathrooms. Each of us is different (yet alike) so you'll have to decide what will work for you. I just want to say that it does take time, but you can get your life back. IMO it takes time whether you take meds or don't as the end result is that the diet changes are going to make the difference. IMO the meds will give relief sooner but if all the foods you've become intolerant to are not eliminated you will be back at square one after weaning off the meds.

And - yes, the holidays and getting together with family and friends (and all their foods) wasn't easy for me either. I have looked at many of my husband's family members (whom we usually spend most our holidays with), and I see how many of them would benefit from eliminating at least gluten from their diet. Of course, they don't see that and feel sorry for me because I can't eat like them anymore. The bottom line is that I feel sorry for them because they don't see that the foods they're eating are causing health problems for them. I guess since the medical field classifies RA, diabetes, thyroid issues, and of course MC and others as separate diseases, it is something others around us believe as well. IMO they are not separate, but all have the same underlying cause. I may be wrong about this, but it is my opinion that symptoms from all those other diseases can also be eliminated when going at least gluten free. If I am wrong, hopefully someone else will chime in and enlighten me.

You've been getting a lot of great information from others here. Always remember we are here to hopefully encourage you and share what has or has not worked for us.

I hope you begin to feel some relief soon.

Paula

[wonderwoman]

There are 2 over-the-counter medicines in the U.S. that we have used - loratadine (Claritin) and ranitidine (Zantac). Also, some have found Benadryl to be helpful.

Polly, did you mean Zantac or Zyrtec?

I took Claritin for 3 months and now switched to Zyrtec. Both worked for me.

[Polly]

Charlotte,

I did mean Zantac, since it is an H2 blocker and not an H1 blocker like Claritin and Zyrtec. Claritin and Zyrtec should work using the same mechanism, while Zantac's is different. I did find improvement with an H1 blocker but then found even more success with the H2 blocker. That's why I listed them both.

Polly

[SallyB]

Dear all

Thank you all so much for the information and help. I feel like I have been hugged by very long arms from around the world!
If anyone out there finds the real me please send her home she is missed! hahahahaha....

Lots of love

S
xx

[tlras]

Oh Sally, we all can relate to everything you said! When I was on Pepto, I got my energy back and was able to do things I couldn't before. There was no way I was going to be able to exercise or get meals prepared for my family in the condition I was in. Now I can start exercising again and I have learned how to use my kitchen better....lol!

I would recommend Yoga for relaxation, probably not power Yoga. I have a wonderful DVD that shows some very good Yoga poises for relaxation and even some meditation. Now that I've been of Gluten and diary for some time, I'm hoping that with some exercise (which I couldn't do before) it will help me to continue healing.

I lost a lot of weight and was too skinny to begin with plus I was too weak to walk down the street. When it gets that bad you kinda need the meds or else I would have ended up in the hospital. It's hard to do anything when you're stuck in the bed. I realize that I may have to pop a Pepto every now and then but I honestly don't see the harm in that. Once the diet kicks in which can sometimes take forever, then maybe I'll never need another Imodium or Pepto. I do believe that my gut is a lot better today than it was 3 month's ago.

Hang in there! The holidays are pretty much the pits.....this is my first holiday season with this nasty disease....but I'm assuming next year will be better. I miss my sweets the most.

@Polly.....isn't Zantac a no-no for those of us with MC? Confused.

Terri

[SallyB]

[quote="tlras"]Oh Sally, we all can relate to everything you said! When I was on Pepto, I got my energy back and was able to do things I couldn't before. There was no way I was going to be able to exercise or get meals prepared for my family in the condition I was in. Now I can start exercising again and I have learned how to use my kitchen better....lol!

I would recommend Yoga for relaxation, probably not power Yoga. I have a wonderful DVD that shows some very good Yoga poises for relaxation and even some meditation. Now that I've been of Gluten and diary for some time, I'm hoping that with some exercise (which I couldn't do before) it will help me to continue healing.

I lost a lot of weight and was too skinny to begin with plus I was too weak to walk down the street. When it gets that bad you kinda need the meds or else I would have ended up in the hospital. It's hard to do anything when you're stuck in the bed. I realize that I may have to pop a Pepto every now and then but I honestly don't see the harm in that. Once the diet kicks in which can sometimes take forever, then maybe I'll never need another Imodium or Pepto. I do believe that my gut is a lot better today than it was 3 month's ago.

Hang in there! The holidays are pretty much the pits.....this is my first holiday season with this nasty disease....but I'm assuming next year will be better. I miss my sweets the most.

@Polly.....isn't Zantac a no-no for those of us with MC? Confused.

Terri[/quote]

[Gayle]

SallyB said

I had the most horrific pains in my bowel which lasted all evening. I took buscapan but it didnt ease off that quickly

This sounds like a bowel spasm, and taking the buscopine (hyoscine) was the appropriate response. Unfortunately, it does take a while for the anti-spasmodic action of buscopine to become fully effective. If you are being dogged by a lot of this kind of spasming activity of the gut, you might try taking the buscopine 2 or 3 times daily for a while, in attempt to prevent this kind of spasming from occurring -- while you are at the same time trying to get the MC under control. Meanwhile, IF YOU ARE ABLE, it does help if we can keep moving when these spasms start. However, I do also know that this kind of pain can be almost paralysing when we are in a full blown spasm. Hang in there.

SallyB said

It's almost like my bowel doesn't want to stop being on red alert

Oh yes, the brain-gut - or - gut-brain connection (which ever way one wants to phrase it) is REAL, NEVER DOUBT THAT!

As you for some reason have “failed” on the Pentasa, there are several other Mesalamine based products available. It may take some experimenting around to find one better for you. As you are sensitive to, and avoiding dairy, Asacol would NOT be a good one for you to try. Ask your Doc about the other options here.

Gayle

[tex]

@Polly.....isn't Zantac a no-no for those of us with MC? Confused.

Obviously I'm not Polly, but I thought I'd take a stab at addressing your concern. Yes, a small percentage of people who have MC cannot take an H2 blocker, because they seem to trigger a flare of symptoms. However, on the other hand, for some of us, H2 antihistamines can be quite beneficial for those of us who have mast cell activation disorder issues. The only way to find out which camp we are in, is to try the med, to see what happens.

This is similar to the paradox presented by antidepressants. For some of us, many/most antidepressants can trigger MC flares. For others, they seem to stop a flare. We are all different, in that different mechanisms are responsible for causing our inflammation. And we have different genes, which almost surely also influences the way that we respond to certain medications.

FWIW, IMO, H2 antihistamines are not nearly as likely to cause an adverse reaction as most antidepressants.

Tex

[Leah]

Hi Sally. I feel your pain all the way here in California.

I totally understand not wanting to take meds, but some of us just have to.... and others ( like me) just didn't want to suffer and lose weight while waiting for the diet to work. I took Budesonide (Entocort) and it worked almost immediately! Please don't think I took this medication lightly though. At the same time, I went GF, DF, SF, no raw fruits and veggies, no beans or fiber, no coffee or tea, and I even stopped eating tomatoes and potatoes ( nightshades) just in case. I wanted to be off the drugs as soon as I could. I am NOT pushing drugs, but it seems that because you are so distraught, you may be a good candidate for either Entocort, or OTC Pepto treatment. Don't think of it as being a failure. We are all different. I commend all of these strong people who have done this with diet alone, but I wouldn't change a thing if I had to do it again.

It took me 6 months to slowly wean completely off of the drug ( it actually has better success if you stay on at least 4 months). During that time, I had NO NIGHTTIME trips to the bathroom and I was only going once - maybe twice- a day. When I was on a very low dose, I was able to "test" foods back into my diet and have been able to add many things back in. There is light at the end of this tunnel.

Do I mourn the loss of bread, ice cream, red wine, and chinese food? Yes! But I am off meds, can do everything I was doing prior to my dx of MC, and only hit the john once every morning. This can get better.

So, I guess I should wrap it up. Whatever you choose, please know that there ARE CHOICES. And that we all we be here for you :)

Leah

[tlras]

Thanks Tex! I will keep that in mind.

@Sally...I agree with Leah! Don't ever think you are a failure if you have to go on a med. I didn't want to either...believe me....but it was the best thing for me and I don't regret it either. I got my life back while making the big time diet changes as well. If you're worried about the prescription stuff you might want to try the OTC meds first to see how that goes.

Hang in there and never give up!

Terri

[wmonique2]

Hey Sally,

Feel better. Take the drugs, they help. No need to suffer. You can always ease into your diet.

Monique

Terri----when are you gonna have your mugshot posted? :-) it's about time...(without the pics, I have a hard time remembering the dialogues between all of the Cathys and Terris etc...)

[wonderwoman]

(without the pics, I have a hard time remembering the dialogues between all of the Cathys and Terris etc...)

I do too!