Need Help

Hello, Walter.

It is good that you have found this site. You will find so much warm support here. You are very tough and strong to face your fears and ask for help. Does your family doctor know you are having these worries?  Can he or she (or perhaps your surgeon) review all the medications you have been taking to see if something has had an interaction?  

When you are feeling very low and fearful, please try to remember that when you spiral down you freeze and will have a hard time making a decision or figuring out what is the matter or what is the right thing to do. I've experienced many moments of frozen fear because of this disease, not only ulcerative colitis but also being told late last year I had cancer due to 30+ years of UC and the subsequent surgeries and j pouch. I made sure I was not alone. I talked to my immediate famiy. I also told my family doctor everything, every fear, every worry so she could have an overview and see things clearly if I could not because of the fog of uncertainty. I let someone else do the managing for a while until I could pick up the slack.

Tell everything to your surgeon on September 6. And tell your family doctor?  It might be panic attacks or an episode of depression due to the major physical changes your body has come through. You have had significant surgeries since 2015, including emergency surgery in a city not your own, and now the constant pouchitis. On top of that is your financial worry, which is a number one stressor. It might be that you need a break and a talk with a trained professional (your surgeon or doctor can refer you quickly and help you jump the queue if they and you feel that is necessary) and then come back and tell us how your appointment went?  You are not alone.

Hi Walter,

Sounds like you have been through the wringer, twice...too much pain, fear, terror, unknown etc for one brain to take in in such a short period of time.

You are most likely suffering from PTSD (Post Traumatic Stress Disorder) which kicks in when our bodies or minds go through a particularly stressful event...usually traumatic, unexpected, accidental or shocking (but not only).

You seem to fill all of the categories at once.

Just think of it as your brain is suffering through a sort of jet lag over what your body has gone through and needs a lot of time, effort, talk & sharing, compassion and comprehension. It is not an easy road to travel and when your body continuously goes through further trauma, well, it just does not have a chance to catch up and heal itself.

Friends with understanding and compassion help, so does family if they can wrap their brains around it all...But often we do not have a personal support system that is solid enough and need to go elsewhere...like to a professional where we can speak freely, feel un-judged and let our fears show.

I think that it can be more difficult for a man who is supposed to be the strong one (no, I am not sexist, just a realist...you guys have historically been the soldiers, warriors and dinosaur hunters)...you are not used to sharing your weaknesses, fears and terrors with others, tend to be less teary eyed and try hard to be the head of the household...so being ill and weak does not come naturally let alone all of the feelings that you are feeling.

The list of symptoms is long and includes sweats, racing heartbeat, panic attacks, jumpiness, interrupted sleep patterns, nightmares, exhaustion (also a physical symptom and remnant of the illness and surgery so often ignored in PTSD), weight gain or loss, loss or sudden increase in appetite (binge eating), depression, crying jags (my favorite in public!), sudden anger...it just goes on and on.

We all react differently to PTSD, some in quiet desperation while others lash out. 

Some (if they can) hide in their beds for weeks or months while others become veritable Energizer bunnies and cannot seem to slow down or stop.

I have had my black moments. 

Talk therapy helps, so does this site...tremendously. You need people who have lived through it and understand you, who can give advice, counsel and love and help to sooth you through this time.

Do not hesitate, that is why we are here.

Sharon

Dinosaur hunters? 

Awww... We all know how you feel, Walter!!! You are very lucky to have find this site! We are sooo very open and honest about EVERYTHING!!! I mean EVERYTHING and we all help one another! 

This surgery (Jpouch) is life altering and hopefully it is permanent! I mean no more surgeries. It takes awhile maybe even up to a year for your body to become use to "the new plumbing"!  Don't give up hope! Hang in there and by all means ... VENT! I was diagnosed with stage 3C colon cancer and have had UC SINCE THE AGE OF 29!  I had the reversal in October, 2015 and I am just getting use to it all. I am truly grateful to my wonder family angled friends that give me constant support because I couldn't have faced this journey alone!!! I think a nutritionist is a must that specializes in Jpouches!!! I can share my regime and maybe you can share with your doctor and go from there. I take Lomotil and Imodium together as a cocktail and seems to work rather than taking just one to help regulate.  I am also on VSL3 which is a probiotic (prescription only). I take it 2 times a day and I swear it has made a tremendous difference in my life!!! It is very expensive so you must get a doc's note and speak to your insurance company also in order for it to be covered. It is a medicinal probiotic that comes in powder form and mixed with apple sauce. It helps regulate the good flora in your body. Remember you have no colon! I also take Oxycodone once a day (at bedtime) for neuropathy that I have due to chemo (ugh)! That slows down the frequency also! 

Maybe a therapist could help you thru this ... It's not easy but it is doable and its sooo worth it! Good Luck, Walter and stay in touch with us!!!!!

Janie

Hi, Walter.  I forgot to add this suggestion. In preparation for your appointment next week, how about writing a list of all the things you need to discuss with your surgeon?  You will make the most of your appointment time, go through your list clearly and cover a lot of ground with him.

I think Sharon is right that it sounds like PTSD.  You experienced physical trauma (the colon is five feet long and your body had to adjust to that loss, and to a new plumbing system) so you grit your teeth and went through it. Now your emotional side, which you might have put on hold to get through the surgeries, is trying to put things in place, sort out what happened, and catch up. And having the frequency and pouch/cuff inflammation is common here so you are not alone in that either. My surgeon said it could take a year or two before a pouch learns how to behave. Be gentle with your pouch, eat clean, eat whole foods as much as possible. I keep a bottle of water in every room so I remember to drink. Keep taking care physically while you turn now to coming back strong mentally. Let us know.

I am so glad you found this group. I was on edge so many times in the last year and this group has given me so much support, suggestions and knowledge. It sounds like me in a lot of ways. I don't have much local support-hubby and kids try, but dont truly understand. I dont have a lot of close friends. My bff is in Florida and going through her own issues. My sister in law is a fulltime rver that travels 3/4 of the year. So I am alone--10 weeks post takedown. I think all the responses can help you. I offer my support. 

I'm sorry to say my understanding is that if this is happening from the very beginning, the pouch is never going to work for you and you should go back to the ileostomy with which you had such a positive experience. Don't carry on as you are. The ileostomy will give you stability and you can build up from there. Best wishes.