Exhausted but thriving

[PlutoCronie]

I was diagnosed with Crohn's Colitis last Spring and found the Rx anti-inflammatory sulfur med to work very well. I supposedly have a mild case of CD. However, In January of this year, I weaned myself off of the Rx because I was afraid that I would not be able to get a GI appointment to get a new prescription, as the pharmaceutical company who makes the sulfur drug had written me a letter saying that they would no longer produce it. I was told by the hospital that the special hospital program that I am on allows for only one GI specialist visit a year, so I would not be able to get a new Rx for an available alternative when my current Rx runs out. So, I thought that rather be dependent on the hospital program that I would try naturopathic remedies. In january I began using high dosages of probiotics, 25 -50 billion daily, and about 3 ounces of pure Aloe Vera juice. This remedy worked well, until recently I began to get some minor flare-ups, but it was the blood in my stool that really alarmed me.

I also developed extreme exhaustion, similar to how I felt before I began my original Rx regimen. Fortunately, I still have a substantial amount of the original Rx left, so I am back on it.The bleeding has stopped, but the exhaustion is intense. I hope that in time I will recoup my energy. Next month I will be able to see the GI again, so I will get the Rx for the a new sulfur drug, hopefully. It has, however, been good to know that naturopathic remedies can work, especially when in a potential lurch, as mine had for about 3 months. I surmise, though, that I had needed to take larger dosages of Aloe Vera for the inflammation as well as for healing, but it was getting too costly. Anyway, I hope to someday return to the naturopathic method, as I don't think that the drugs that we take facilitates actual healing of the colon; they only prevent the condition from worsening, and they limit the symptoms. This is not the same as restoring the colon to the natural health it once had. Thanks for listening! :wink:

 

[billyjoel]

PlutoCronie, sorry to hear that you have been having a rough time. I am glad that you are feeling a little bit better.

Welcome aboard here! It is good to have you as a member of the forum.

 

[PlutoCronie]

Thanks so much for the greeting. The situation has actually become unresolvable since my post as I will no longer be able to see a GI to get a new Rx. I was told today by the hospital that the special insurance had only been good for 6 months and I have already used up that time period for that one GI specialist visit. So now I only have 2 months Rx left and will then have to depend totally on the Grace of God and naturopathic remedies. I feel totally better right now and its a shame that I can't remain on some Rx. Thanks again. Glad that I joined this site.

 

[David]

Hi PlutoCronie and welcome to the forum

Your exhaustion is concerning to me. You're only able to get in to see your GI once per year? Or am I misunderstanding?

Are you able to at least go to a normal doctor to get your blood work done (a CBC sounds like a good idea)? I'd also ask for a vitamin B12 test as many with Crohn's Disease are deficient and such a deficiency can lead to exhaustion.

Again, welcome I'm pleased you're here!

 

[PlutoCronie]

The latest info is that I can't see any specialist anymore, as I have used up whatever temporary allowances I had on the program I was on. However, I am going to try to see my General Practitioner, as I think I have unlimited visits permitted on the program. I will see if I can get the Blood-work done, as well as see if she can sign for a new Rx. The somewhat good news is that I am now trying vitamins that are crushed and liquified and I do feel a lot better. Absorption is everything with this disease. I also include the 25 Billion probiotic supplement I am also calling pharm companies to see about low-cost sulfur meds, so I can use them if I need to.However, my ultimate goal is to be free of the medical establishment for my Crohn's. I believe the recent exhaustion was due to a flare-up, but the liquified vitamins seem to be helping. I am using a good multi (which includes the D3) plus extra D and C. I have been off the Rx meds for 2 days because I have only 1 3/4 months left and don't know when and if I will be able to get some more soon. Thanks again!

 

[David]

Multivitamins provide nowhere near the amount of vitamin D and vitamin B12 someone with Crohn's Disease who is deficient would need.

 

[PlutoCronie]

Multivitamins provide nowhere near the amount of vitamin D and vitamin B12 someone with Crohn's Disease who is deficient would need.

I am working on getting an appointment to see a GP, so maybe I can get tested for vitamin deficiencies. I really do feel better, though, since I've been absorbing the vitamins better.

 

[PlutoCronie]

:medal1: I have had success in getting in touch with the right agencies, so it looks like I will be able to see my GP, have some tests done as well as get a new sulfur Rx from her. I'm not out of the water yet, but I am a lot closer to resolving my predicament. I also found out that the Rx is a lot less expensive than I though it would be, in case I can't get any Rx financial; assistance. I am also seeing a spiritual practitioner for a special healing anointing. Thanks to everyone for sharing this burden with me and I will remain a member even when I start feeling consistently better. Besides the fact that CD is a problem even when its in remission, I think its important to be there for other people who might be needing support and encouragement, even if I'm doing OK.

 

[GFinDC]

Hi Pluto,

Some other natural things you could try are Marshmallow root capsules and okra and slippery elm. These are muscilagenous and may help coat your gut to protect it from outside irritants. Pepto Bismol is also good for that. I think taking these on a long term basis would be bad for absorption though, so they are more of a bandaid than a solution. I have celiacs not Crohn's so I can't say for sure these are ok for you. Just some things to consider.

 

[PlutoCronie]

Hi Pluto,

Some other natural things you could try are Marshmallow root capsules and okra and slippery elm. These are muscilagenous and may help coat your gut to protect it from outside irritants. Pepto Bismol is also good for that. I think taking these on a long term basis would be bad for absorption though, so they are more of a bandaid than a solution. I have celiacs not Crohn's so I can't say for sure these are ok for you. Just some things to consider.

Yep, I've already "befriended" at least one of these, Slippery Elm. I've been making my own "Crohnie Tea", for a while, all basically anti-inflammatory herbs, and Slippery Elm was included. Maybe I'll double up on this one. Thanks! BTW, I like the way you have Jobs afflictions as the Biblical Quote in your signature. Yes, definitely, boiling bowels is a good metaphor for what we have.:frown:

 

[PlutoCronie]

I saw my GP yesterday and got a Rx renewal, still unfilled, though, for the Colozal. I am also back on the Colozal Rx that I had stored-up, as I am now assured of getting a Rx refill in the near future. Right now, my dilemma is choosing what kind of Rx assistance plan to take. I can't go back to the original plan and stay on Colozal, (balsalazide disodium) which works very well, because the pharmaceutical company that that prescription assistance dept works with no longer manufactures Colazal; I might have to change to another Rx, perhaps a sulfa drug similar to Colazal. My other alternative is to use a short-term Rx assistance plan, from another agency, in which case I can stay on the Colazal, but can accept help from this agency for only six months. My GP will give me blood-tests on my next visit, and she also suggested another colonoscopy. Fortunately, I am eligible for free Colonoscopies from Women's Way. I feel both relieved that I know that I will be on some kind of Rx but very disappointed that I may not be able to resume the Colazal. Regarding the emotional impact of all of this, I experience varying degrees of kindness, or, cold condescension from the different medical personnel that this disease has forced me to deal with. What I can't tolerate is not having my phone calls returned when I leave V.M. messages. I am always polite, to the point, and very factual, so there is no reason for my calls to be ignored, but unfortunately medical personnel are not necessarily any more considerate or reliable than other types of bureaucratic administrators. This lack of consideration, respect and sensitivity plays havoc with my stress level, as, like many people, I live an active life and need to know what to expect, how to plan and what my schedule will be. I am very grateful for this web-site especially because the majority of medical practitioners and medical administrators I've dealt with leave a lot to be desired.:yrolleyes:

 

[David]

Hmmm, that's a tough predicament After the six months would you be able to go back to the other one?

 

[PlutoCronie]

Hmmm, that's a tough predicament After the six months would you be able to go back to the other one?

Well, the original assistance plan will still be available to me, but the Colazal will never be, through this plan. The staff-member told me to research facsimiles of Colozal and if she sees that her dept. will cover it I can receive their help, now or in the future, as long as I still financially qualify.

 

[David]

Here's a starting point for your research.

 

[IAmTheWalrus]

Think hard about ditching the meds in the future and going all natural. You might regret it in the long run, although the way the health service is ran in the U.S I wouldn't blame you. By using meds they keep the inflammation away and in turn that helps heal your colon, no inflammation = bowel has time to heal.

Either choice, I hope it works out for you!!

=D

 

[PlutoCronie]

Think hard about ditching the meds in the future and going all natural. You might regret it in the long run, although the way the health service is ran in the U.S I wouldn't blame you. By using meds they keep the inflammation away and in turn that helps heal your colon, no inflammation = bowel has time to heal.

Either choice, I hope it works out for you!!

=D

Thanks! I surmised that the Rx meds would maybe heal the colon by keeping the inflammation away. I hope that is what happens should I stay on them. If I ever make enough $, I might go back to Naturopthic, for a few reasons, independence from our health system being a major one. Thanks again and hope things are going well for you. :ghug::bigwave:

 

[PlutoCronie]

Here's a starting point for your research.

Thanks! I will show the names to the Rx-assistance worker and see if her dept. will cover (any of them) for the long-term program. If one does, then I have to get a new Rx from my GP.

 

[David]

Unfortunately it might not be quite that easy. Formulations can release at different areas of the intestinal tract. I'm unfortunately not familiar with Colazal and don't know where it is formulated to release. But you want to find one that releases in the same area if Colazal works well for you.

 

[PlutoCronie]

Unfortunately it might not be quite that easy. Formulations can release at different areas of the intestinal tract. I'm unfortunately not familiar with Colazal and don't know where it is formulated to release. But you want to find one that releases in the same area if Colazal works well for you.

Right, I had known about that from another thread. I'll have to ask my GP about the formulation and releasing in the same area. She's the one who will giving me the new Rx, so she would have to check this out anyway.:ghug:

 

[PlutoCronie]

Back to Square One / "Catch-22"

Well, I won't bore everyone with all the complex details, but I am now back to where I began a few weeks ago. I am potentially without a way to get my Colazal Rx refill for my Crohns. I cannot get a facsimile of it because I cannot get a GI visit for a new Rx, as I've used up my specialist visits in the Community Care program I was in.The hospital Rx-Assistance program no longer covers for the Colazal, but, my GP cannot write a Rx for a new drug, only a GI can do that. On my own, I have to research pharmaceutical companies that have a patient prescription-assistance program. (The generic name for Colazal is balsalazide disodium and it is an anti-inflammatory, sulfa-based drug.) All other avenues are closed at this point after my having investigated local programs. Meanwhile, I am still researching holistic mind-body-spirit methods of healing, which I am total believer of. My only consolation in all of this is that if my own stress caused this malady than I can say it is only because I am such an ambitious, exacting, hard-worker that I become so stressed out. :ytongue:I obviously do not know how to handle stress well. This is regarding stressful emotions such as grief, anger, worry, as well as goal-oriented stress. I internalize these emotions and they manifest as inflammation-based respiratory ailments and, recently, in an inflammation-based disease like IBD. Thanks for listening and I wish everyone peace and happiness despite their trying circumstances. :heart: